A small imagining, based on the metaphor of mycelium in forests. In this imagining, we are the trees.
Mycelium are fungal material, spread throughout soil and other substrates, which can fruit into mushrooms under the right circumstances. Mycelium can be tiny, or, as the Armillaria in Oregon, vast and ancient. Mycelium not only break down dead matter, they also distribute resources across ecosystems. The mycelium network within a forest can link trees across a vast distance, sharing nutrients from one part of the forest to another.
What is the soil in which you find yourself? (Your social context, your environment.)
Does this soil feel rich and nutrient-dense, or does it feel depleted? (Are you nourished and supported by your social context?)
Do you remember a time when you were in different soil? (Have you ever found yourself in a different social context?)
Who is in this soil with you? Who is in your forest? (Who is alongside you? Perhaps these are cherished companions, perhaps they are not. Forests are places of magic, and also danger, after all.)
What else is present in the forest? (Are there birds, squirrels, bears, bees, mosquitoes? What other non-tree / non-human companions are in your forest?)
Who are you connected to across distance? (What companions do you cherish and stay connected to? These may be living or not, they may know you in return or not. The mycelium network is magical because it can connect us in seemingly impossible ways.)
What nourishment is shared across your connection? (What do these connections make possible – what do they offer that you do not receive in your immediate environment?)
What information is shared? (What have you learned from these distant connections?)
What do the mycelium share from you, out to other parts of the network? (What contributions have you made, what has your existence made possible in the lives of others?)
We (Lindsey and Tiffany) are writing this letter from Calgary, Alberta, in so-called Canada. From Blackfoot Confederacy (Siksika, Kainai, Piikani) and Stoney-Nakoda (Wesley, Chiniki, Bearspaw) and Tsuut’ina land. Métis land. From the place where the Bow meets the Elbow river.
This is beautiful, breathtaking land.
We wonder about the land that you are on.
Are there trees? Rivers? Mountains?
What do you see when you look out the window, when you step out your door? What do you smell? What do you hear?
What is the landscape, and what are the plants and animals that you share space with?
What is your relationship with the land you’re on?
In an Indigenous Counselling and Trauma Work course, Cree/Métis therapist and academic Karlee Fellner taught Tiffany that the land is old enough, strong enough, wise enough to help us hold our pain, no matter how vast that pain is. As we write this letter, we are thinking about the pain that exists following the events of the last years.
The land we write this from, and the Indigenous people on this land, and every marginalized community here, is currently threatened not only by the conservative government in power in this province, but also by Canada’s ongoing commitment to extractive and exploitative relations with land and people.
We’re sharing this context because we want to be clear that we recognize as much racism, as much white supremacy, as much racial capitalism and neoliberalism here in our country, in our province, in our city, as we see happening in the US. We are not writing from a position of distance or superiority, but from a position of shared struggle against these oppressive discourses and systems. And, as white settlers, also from a position of complicity with these discourses and systems.
We planned to write this letter before the results of the 2020 presidential election came in, because we wanted to offer some care to our friends in the US. But we found ourselves, like so many other folks, slowed down by the thick mud of distraction and doomscrolling through our social media feeds. So, instead, we are writing this after Joe Biden has been named president-elect, after the wave of celebration and the deep collective sigh of relief. (We were relieved, too!)
This little document contains some of our hopes for you, and reflects some of our hopes for ourselves. It also contains some art, a little recipe, and a few reflection questions that we have found helpful for ourselves. The document comes out of our work together in the Unexpected Light speculative fiction and narrative therapy course, and we hope that this document can be a tiny invitation to imagine more just, more liberated, more possible futures.
We wonder about what kinds of futures you hope for, and how you learned to hope for them.
What are the systems and structures that you hope will change?
What do you hope will be possible once these systems change?
What are the existing forces that have the power to change these systems – what are the networks working underground to transport nourishment, encouragement, information; what are the histories of collective action, the legacies of resistance?
Do you see a place for yourself in these existing frameworks of resistance and change?
We hope that you can sink your strong roots down into the earth, and feel the mycelium surround you, supporting you and enabling you to support others.
How to Make a London Fog
To start: 2/3 mug of strong Earl Grey tea
Flavouring: Spoonful of vanilla sugar Splash of vanilla extract
To finish: Warmed and frothed milk or milk alternative
London Fogs are one of Tiffany’s most cherished soothing rituals of care, both alone and with friends. This recipe was included in the Unexpected Light course, and has become one of Lindsey’s soothing rituals, too. So, we decided to share it with you, too!
What are some of your rituals of care? Who taught you these skills? Who do you share them with?
We chose mushrooms (or, more accurately, the mycelium network!) because of the way that both hope and oppression can live underground, barely visible for such a long time, sustained by nearly invisible threads sometimes across vast distances and over unimaginable lengths of time, and then, given the right circumstances, the right rain (to quote Tiffany’s beloved Nathan), they spring up again like mushrooms.
We were thinking about how shocking the rise of fascism has been in the US and also in our own province, and yet how unsurprising, how these networks and threads have persisted. Death cap mushrooms. Indistinguishable from harmless button mushrooms when they are just sprouting.
And we were thinking about hope, too. About collective action. About the community care, the mutual aid and networks of support that sprang up in response, and that had always existed. Truffles. Precious, hidden, sustaining the roots of trees and feeding the forest, even when they are deep underground. Protecting ecosystems from drought and making the most of available nutrients in times of scarcity. (May we each be some glorious truffle-hunting animal, seeking out what is delicious and life-giving.)
What are some delicious things in your life right now?
What delights you?
What comforts you?
What brings you joy and ease?
And what are some nourishing things in your life right now?
What sustains you?
What warms you, strengthens you, fortifies you?
What brings you energy to keep working towards change?
We thought about how, in the last four years, many mushrooms have sprung up, and how some of them represent decay, rot, destruction. How the mycelium network can be so sustaining but also how it can be something other. How it can represent “ruptures in our unspoken contract of trust and care” (to quote BK Chan). And also, how even decay (maybe especially decay) offers us the opportunity to take something noxious and turn it into something nourishing.
To quote Paul Stamets (the real-life mycologist that the Star Trek: Discovery character is named after), “fungi are the grand recyclers of our planet, the mycomagicians… Fungi are the interface organisms between life and death.”
If we are, then, between life and death, and with choices about how to navigate this liminal space, perhaps we can learn from the fungi around us.
Have you experienced or witnessed life-affirming transformation?
What made it possible?
What supported the work of transformation
Credit must also be given to adrienne maree brown for identifying a tugging between life and death in her post on unthinkable thoughts, which was written specifically for movement organizers in Black and Brown organizations.
We recognize that the nourishment we find in her words was not first meant for us, and parts of it are not ours in any way. Thinking about life and death, cultural urges that sustain life or that threaten it, we must acknowledge how white supremacy, which benefits us, which makes our lives easier, makes the lives of Black and Brown and Indigenous people in both of our colonial nations so much harder to hold onto. As Claudia Rankine and Judith Butler so clearly named, the scripts available to us as white people acting with whiteness lead to the death or incarceration of Black people. Access to life, to systems that support life, is not equal across social location.
And, equally true, we share adrienne maree brown’s hopes when she writes:
“i want us to want to live in this world, in this time, together.
i want us to love this planet and this species, at this time.
i want us to see ourselves as larger than just individuals randomly pinging around in a world that will never care for us.
i want us to see ourselves as a murmuration of creatures who are, as far as we know right now, unique in all the universe. each cell, each individual body, itself a unique part of this unique complexity.”
We thought about the ruptures that interrupt our togetherness and how perhaps hope can be a balm for the ruptures. We thought about hope as a collective practice (to quote Angel Yuen), hope as a discipline (to quote Mariame Kaba), hope as something that we can carry together.
We imagine the network that connects us to you, our friends in the United States of America, whose country has suffered such ruptures – ruptures as deep, as old as the founding of your country, so similar to the ruptures that also fragment so-called Canada. We want to connect, like mycelium. The threads and tendrils that stretch across distance, and that, given the right rain, fruit into mushrooms.
May we grow the medicinal mushrooms, the transformative mushrooms, the mushrooms that rejuvenate and regenerate. And may we also rest sometimes, knowing that this network is vast, our connections are real, and the mycelium can sustain us even in drought, and support us through transformation.
We love you, and we are stretching our roots out to you, with hope for all of us to find the way through, to do the work of decolonizing, of amending the soil, of being part of an ecosystem that is more wildly diverse, chaotic, joyful, and generative.
Lindsey and Tiffany
 Chan, Karen BK. (2020). In Calling in: Doing social justice with compassion. Webinar.
So many thanks to Osden and Sean for presenting this webinar with me, to Joe for editing the video, to Shara for the transcription, and to all of my patrons for supporting me to be able to do this work. This webinar was presented on June 13, 2020, and this video and transcript was available to patrons a few days early.
I am so thankful to the folks who support my work. It has been a challenging time, but I really cherish this work, and I think it makes a bit of a difference, and it means a lot to me to have your support.
The following is an edited transcript of the Mapping Borderline Spaces webinar. Content notes for discussion of anti-Indigenous violence, stigma, trauma and abuse, suicidality, and substance use. This webinar is part of a larger project of creating resources by and for folks who identify with Borderline Personality Disorder. You can find this growing collection of resources at https://tiffanysostar.com/category/bpd-superpowers/
The experiences shared here do not represent the experiences of every person who identifies as borderline, or who has been diagnosed as BPD. Each person is the expert in their own experience, and each person is at their own unique intersection of identities, relationships, and social contexts.
Tiffany: Osden, did you want to start with your introduction?
Osden: Yeah. I can do that. I want to say first and foremost that I’m feeling very stressed out, kind of activated today, a little bit on edge. Ideas of how I thought I was maybe going to talk about things yesterday are different today, but I think it’ll all still be relevant and still important.
I’m Métis, which is historically a mixed nation of Indigenous people here in well, if you call it Canada, on Turtle Island. I live in Toronto, which is known as a meeting place, where the trees meet the water. And I’m a little bit nervous because I haven’t been perceived by this many other human beings in a long time. So, I’m going to cheat and look at paper in front of me a bunch.
I am on the traditional territory of the Haudenosaunee, Wendat, and Mississaugas of the Credit First Nation, which is under the Dish With One Spoon Wampum Belt covenant, which is a treaty that precedes colonial treaties on this land that talks about sharing the resources of the space, but also caring for a space in a way that’s responsible to one another and the land, hence the idea of a dish with one spoon.
And yeah, Rodney Levi is a Mi’kmaw man who was killed by police last night on the East Coast of Canada and that’s a very common thing here, and I’m just feeling it a lot today, so. Thank you for giving me space.
Did I say who I am? Also, I’m Osden [laughs] and I used they/them pronouns, and I’m a visual artist, and I identify as having BPD and then all the other stuff I said.
Tiffany: Sean, did you want to introduce yourself?
Sean: Hi everyone, my name’s Sean, pronouns are they/them. I was introduced to the BPD Superpowers group by someone who is in this room today, so I’m really thankful to her for introducing me. I’ve been working with Tiffany and Osden for the last year. I received a diagnosis of BPD in 2018, and have been struggling, surviving, thriving, all sorts of things, ever since.
Tiffany: And I’m Tiffany. I use they/them pronouns. Both Sean and I are on Treaty 7 Land. Calgary is one name for this space. This is traditionally the land of the Blackfoot Confederacy including the Siksika, Kainai and Piikani First Nations, as well as the Stoney Nakoda which includes the Chiniki, Bearspaw, and Wesley First Nations, the Tsuut’ina First Nation, and the Métis Nation of Alberta Region 3.
And every time I say that list of First Nations I am just struck by how this space has been such a space of mingling and community and connection, and how the colonial project pushes us apart and into individualizing. And violence against Indigenous folks is very much present in this space and across Turtle Island.
The BPD Superpowers group and all of us here are watching the violence against the Black community in the States and in Canada, and in other parts of the world, and are fully in support and solidarity with the Black Lives Matter movement. That’s happening now and we can’t separate this event from what’s happening politically around this event.
The first question that Sean and Osden are going to address is:
What is the one thing you want participants to take away from this webinar?
Osden: So this I think above everything, is a question that I’m like, oh, yeah, it’s a different answer today than it might have been yesterday. And I was talking with a friend earlier today about how there’s a meme that I like, that talks about borderline people and people with bipolar disorder, and how you are always having to work and be conscious and be in control of your emotions, like, 24/7.
And today that’s the thing that like, really, really stands out to me, is how sometimes I think I’m perceived as somebody who is really good at self-regulating, and maybe even people take it for granted, but it’s a constant amount of effort and it’s tiring. I guess just remembering that it’s not that we’re bad. I really identify with being in a kind of panicked fight or flight state when I’m feeling more activated by something that feels dangerous or upsetting. I have to be really careful not to be more reactive, or I can be more inclined to be avoidant of friends.
Anyways, my big takeaway was just to acknowledge that folks who are borderline have to constantly be putting in effort to be the kind and caring and appropriately responsive and present human beings that we want to be.
Sean: Thanks, Osden. I think one of the reasons why I volunteered to have this conversation is because I struggled a lot in some of my close personal relationships with advocating for myself.
I’ve experienced a lot of ableism. Even as a white settler, I have experienced a lot of difficulty accessing health care and have had multiple clinicians and therapists tell me that what I was experiencing wasn’t real.
I really want people to know that even though I am put together, and lots of the folks in the BPD community are thriving, it’s like Osden said, it’s a daily exhausting struggle to keep ourselves regulated. And when we’re not regulated, there’s a lot of shame attached to it, because people don’t really like to see us out of control, I guess.
I identify with the window of tolerance concept, where when I’m emotionally dysregulated, I present very differently to people. So I really want to challenge some of the ableist assumptions that come along with BPD.
Tiffany: I’m not going to contribute much in this conversation, I’m just facilitating. But I work as a narrative therapist, and I know that we have some service providers, some mental health professionals in the audience here today. As someone who is on that side of some conversations about BPD, I just really would like to encourage folks who offer services, medical or mental health care or work as teachers or professors, or in any kind of situation where you have that power over dynamic that service providers have… this project exists because of how pathologising and stigmatising, and how unjust so many of the resources out there are. So if you’re in this conversation and you want to learn how to better support and be in solidarity with folks who identify as borderline, don’t stop at this webinar. Really interrogate what you’ve been taught about what BPD is and what it means, and who has it. And keep digging and find community voices. I think that is the one takeaway that I would offer to fellow service providers.
Okay, so our next question is:
This whole group is framed around the idea that BPD Superpowers, and some of the things that borderline makes possible. So, what are some of the BPD Superpowers that you’ve felt in your own life, and that you want people to know about? What might become possible if these Superpowers were more visible in the discourse around BPD?
Sean: Some of the Superpowers that I resonate with specifically are my capacity for love and intimacy and understanding of other people. I generally, before my diagnosis and before learning more about the neurodivergence that I experience, honestly thought everybody navigated the world the same way I did. I didn’t quite understand sometimes when people weren’t outraged at injustice, or didn’t love as big as me, but I’m seeing it now and instead of being maybe confused and hurt by the differences, I’m really accepting, or learning to accept, at least, ‘cause it is a daily struggle, but to really love myself for how deeply I can experience emotion.
And often, I think I empower myself with that experience, to better understand other people, and to work in social justice spaces, because that’s where I would say the majority of my work lies. It really has developed over the years as an increased capacity for that work. I don’t think I have the luxury of turning off or checking out.
And something the BPD group talks a lot about is that we don’t really get the luxury of getting to opt out sometimes, but I really do like the fact that I have this emotional intensity and I find it drives me quite a bit.
I think, to answer the second question about what becomes possible if these powers were visible in the discourse – I think there would be a lot more compassion towards people with BPD, understanding that when we are in emotionally reactive states or have what is considered bad reactions to very real and probably harmful things that we experience, there could be a little bit more patience and understanding. And I really would expect that from at least a clinical perspective.
Within intimate relationships I think it would be really, really great within families, friendships, and as I mentioned, intimate partnerships, for people to be able to see us a bit differently and to maybe hold a bit more space for the nuance in how we experience the world.
I think in understanding my strengths and what empowers me, that also gives other people the opportunity to see me in a good light, even when I’m in different spaces that seem bad or reactive, or problematic.
Osden: I’m just going to just emphatically nod so much every time you talk [laughs].
Thinking about BPD Superpowers in my own life, and what I really want people to know about, what Sean was saying resonates strongly within me. I think that sometimes the challenging aspects of being borderline can be really focused on, and maybe not just because like, you know, we’re talking about supporting borderline people. I can’t say that everyone has had the same experience as me, but like, not just what might be challenging in relationships, but it’s challenging for me to experience this turmoil internally and I think that’s maybe something that it’s helpful for people outside of me to know.
But it’s also completely euphoric sometimes. I think that’s a Superpower. Like if I go into an art exhibition that I’m really moved by, and nobody judge me here, it feels like being on MDMA, like it’s so cool to enjoy art that much.
So, the intense emotions also have these amazing high points where you like, feel love so deeply and you feel care so deeply.
And what Sean said about not realizing other people didn’t feel things the same way as me – I’m very considerate, I’m very aware of small things people tell me are meaningful to them, I remember them.
Thinking about insight as something really powerful that we can offer in relationships and I think also like, because I spend a lot of time self-regulating and being really aware of how I’m reacting to things and how I want to treat people, I’ve had a great experience helping people I care about in my life kind of develop better standards of how they want to be treated by people. Even if sometimes I wind up getting excluded because of those standards. That’s one of the big things.
And just the amount of tools that I’ve had to develop to kind of like, get by in the day to day, and keep things regulated or acceptable. I think there’s a lot that I can share and there’s a lot of strength in that.
Tiffany: That idea that there are insider knowledges and tools and skills within the BPD community is important. The group put up a blog post about big feelings in the pandemic, bringing in some of that wisdom, and I think that that in itself is a really valuable thing to bring – the idea that within BPD community, and within Borderline folks, there are skills and knowledges that can help even people outside of the Borderline community and outside of Borderline experience.
And one of the stigmatising views is that BPD renders people less capable, less insightful, less regulated. Which is how I’m going to segue into our next question, which is:
What are some of the most difficult assumptions about BPD that you’ve faced in your relationships? Are they linked to ableism, and how has ableism shown up in your relationships?
Sean: This is a really painful but important question. I just want to acknowledge that. I think…where do I want to start?
What are some of the most difficult assumptions? I think… that I’m toxic, that I’m manipulative, that I’m inherently abusive.
I think one of the things that I’ve really been working on in myself over the last few months of having had a break from a relationship recently, was just how much of my reactions and how much of my existing was in response to abusive behaviour. And I really identify with the fact that I was surviving a lot of these moments. And surviving is fricking scary sometimes, for me, and it might not be life or death, but my brain interprets it that way. And so, surviving can look like yelling and screaming to be heard, because I’m constantly being gaslit. And it might mean like one day I’m fine, I’m fine, and then the next I like, snap and I self harm. And I think the thing I struggled the most with was always hearing that I was a bad person because of those things. Like when I finally got pushed to a point where I could no longer hold onto that abuse anymore, I got labelled as manipulative, as toxic.
And I still struggle with that within all of my relationships. I think these are linked to ableism, like I absolutely believe so. I think it’s very, very convenient for people who are in positions of power, whether that be a clinician or an intimate partner, to tell me that my reactions are inappropriate and to tell me that I’m behaving inappropriately to silence me. And I do think that’s linked to ableism. I think it’s an explicit tactic that a lot of abusers use, and I’ve had that in particular.
I’d like to talk about experiences outside of the abusive relationships that I’ve had, but unfortunately that’s not my experience right now. And I think in my relationships with clinicians, it’s shown up by telling me that what I’m experiencing isn’t ‘clinically relevant’. I remember once being assessed by a psychiatrist, telling me ‘well, you have too many traumas to be considered for a PTSD diagnosi’s, for instance.
Or when I felt like I was really in a place of struggle in my life, and I said I identified with the word ‘ill’. I didn’t’ have a BPD diagnosis yet but I identified with being ill, and they’re like, “you’re not ill”, and they mean it in a way of maybe empowering me, but it ended up being an incredibly invalidating experience, so I don’t trust you anymore if you are going to tell me that the daily life that I have, when you see me, you don’t see me outside of this interaction, is not a struggle, is not real. Like how can I possibly ever learn anything from you, because you don’t believe in my existence. And I could talk about this a lot, but I would like to hear Osden’s thoughts, so I’m going to pause.
Osden: I knew that you had some good present feelings on it, not that they’re good, but that you had a lot to say, so I was like, this is your moment.
I feel so much of that, so much, so strongly, and I was thinking of what you were saying about clinicians. And like, I come from a background where at the time in my life when I was going through trauma, it was also very important for me to hide that I was having a lot of traumatic experiences and that my home life wasn’t safe. And so, you know, I can get good grades and I can work a job in capitalism, but that doesn’t mean that I’m not suffering deeply, like in woe and inner turmoil, and wishing that I could like, burst into flames in a way that would represent the amount of emotional pain that I’m dealing with on the daily.
But because I could go through these steps in a society that’s mostly focused on being able to do those things, I had the experience for a really, really, long time of going to therapists and doctors and being like, I’m so anxious, I’m suffering so much, I’m having so many problems with this thing, and them being like, “oh, how’s work, how is school?” and being treated like I was fine.
And I was thinking about this earlier, In it’s own way, that’s so ableist. Just because somebody doesn’t look like they have an… and I don’t know if it’s like, an okay way to use this analogy, that’s like, thinking that someone doesn’t have a disability just because they’re not in a wheelchair. Just because I can go through certain motions that are perceived as normative, doesn’t erase all of the experience that I was trying to share and trying to get support with. And so that’s ableist and almost this kind of reversed way as compared to how we think about it.
And I know we talked about really wanting to emphasize when we talk today, to trust that people are the experts in what they’re experiencing. And I didn’t get that trust and that was really hard for me for a long time.
In a more intimate and relationship way I would say the most difficult assumptions are that when I’m reactive, the thing I’m reactive about isn’t still a legitimate problem. Just because how I react can be read as like, ‘oh, you know, you’re being more upset or more needy or need more reassurance than you should because of your BPD,’ doesn’t mean that I’m not like, ‘no but you still did something shitty to me, it’s fair that I’m upset. If you don’t like how I’m expressing that I’m upset, that’s fine, but we also need to address, that there’s like, a valid reason for me to be upset.’
Which in a weird way mirrors the thing I was saying about being told I was fine when I wasn’t.
Yeah, those are two things… they’re the most difficult assumptions. And they’re very, very ableist and I’ve internalized them to certain degrees, too, and that’s difficult. Especially in relationships, one of my partners thought that my reactions were the problem rather than whatever thing set me off being the problem. And after I had a big breakup last December, I read SO much neurodivergent and ableist theory and disability theory to get a sense of how not to be ableist towards myself and how to realize that there is truth in these reactions, even if you want to control how you react. That’s my rant.
Tiffany: The thing that I really notice in both of your response, is people not believing what you say about your own experience.
That idea having your reactions framed as inherently inappropriate or over the top and not ever addressing what may have happened to cause the reaction, that seems like a really critical issue, and is tied I think, to assumptions that BPD means being unreasonable or reacting to things that don’t deserve a reaction. And I think we can separate that from having reactions that are not preferred by the person on the receiving end, or the person having the reaction, because that’s something we’ve talked about, too. But the thing that sparks a reaction is real.
How can folks respond when you’re reacting to something, given that there probably is something valid at the root of that reaction, but how you’re reacting may not be what they want?
Osden: I can’t say that I’ve fully figured this out, but I’m always working on it. One of my big tools is if I tell somebody that I need a minute to respond, like I swear to God, I tell people this on a first date, if I say that something has hit the wrong way and I can feel myself going into panic brain, and I’m like, ‘just one minute, I can’t talk to you for one minute.’
And if I say that I need that space and then I’m pushed when I need that space, I’m going to react strongly, ‘cause I can feel myself panicking and I need that space to be respected, or I’ll react in a way that I don’t want to. And the other person doesn’t want me to either.
But another thing that’s meaningful and important is acknowledging… and I’ve only heard people describe this in theory, I haven’t had this experience with a partner yet, but I’ve had early dating situations where people will say, ‘when someone gets upset, you know, maybe you don’t like how they’re getting upset at you, but you look for the truth, and where the upset comes from,’ and that’s like, genius?
But I think really great things for helping me defuse when I’m feeling really hotheaded is validating what I’m feeling without sort of negating the intensity of what I’m feeling. So like, ‘yeah, that sounds really upsetting, and I would be upset by that so I can only imagine how intense that must feel for you’, is something really wonderful that someone I know used to say to me. And that was great because sometimes people are like, ‘oh yeah, I’d totally feel like way too’, and it feels like very brushed off when you’re like, ‘no, I feel like the world’s ending, please, take me seriously.’ That’s a really good one.
Letting me know if I’m hurting you is a really good one, too, because I care so much about whether or not I’m hurting my loved ones, and I feel so much shame if I am reactive in a hurtful way, and that’s pain that I deal with for days and days. I’ve had a lot of people mistreat me, and I don’t want to mistreat anyone. If somebody’s like, ‘hey, I know you’re feeling kind of frightened right now, but the way that you’re saying this is hurting me or it’s scaring me’, then that helps me have the kind of presence to kind of check myself. Because I so strongly don’t want to do that that. I don’t know that those things would work for everyone, but they work for me. And I don’t know if there’s anything Sean wants to add.
Sean: Thanks, Osden.
So one of the things that I’ve thought about are ways of inviting me to think of how I’m expressing things differently. So if I’m in a really intense state where I’ve dissociated let’s say, or withdrawn, or even if I’m yelling, to invite me to be like, ‘I understand that there are some big emotions here’ and really validate that what I’m experiencing is real, and then inviting myself to try and express them differently.
I think what I describe as ‘disarming’ is really important for me. And that can be done in a number of ways. I think the biggest thing to take away from this conversation is to check in with the person who has BPD. For me it’s sometimes a bit of physical pressure of touch from someone who I’m interacting with that can really disarm me. But asking, ‘is there something I can do in those moments when you’re out of your window or you’re feeling just extreme distress that I can do to bring you down a bit?’
Something that I know is really helpful in my therapeutic relationship is my therapist will ask me to locate in my body where I’m experiencing the distress. And I know that doesn’t work for everybody; I find it really resonates for me. But it’s a very collaborative approach, too, it’s not like, what you’re experiencing is on you, and it’s on yourself. It’s like, ‘how can I support you in moving through this really big experience?’ And so in a therapeutic way, that’s like, ‘let’s take a second. I know that you want to talk and you want to work through these things, but if we ground ourselves, do you think there’s a better way to express it right now?’
And I can feel myself getting activated as I talk about this. But being able to locate it in my body, or to feel a physical sensation and actually experience that before I express myself can be really helpful.
Other things I really like to hear or see in someone, if at all possible is if they’re not defensive right away, or if they don’t show that they’re ready to fight back, then it kind of also gives me the indicator that I’m not in a fight situation. I know that it’s not easy all the time.
I know that we wanted to acknowledge this piece when we were talking about this the other day, that everybody brings in their own experiences, and so if I’m yelling and that’s triggering to my partner, I also have to understand that. But just taking some time and giving us some space to work through these emotions [is helpful].
Osden: I think that my main emphasis with what I’m going to add is to trust people about their own experience, because while what you’re saying really resonates, most of that was very, very different from my experience.
When I’m in an activated space, I feel it so deeply within my body. And I had a conflict with a friend a couple of days ago and I spent like, the last two days, despite, you know, whatever kind of activities I did to try to kind of self-soothe, feeling almost literally like a cornered animal. Like, I’m going through life, and nice things are happening, and people are walking by, but in my mind, I feel like I’m cornered and I don’t know if I need to run or if I need to fight, or what I need to do, and I have to filter every life experience through feeling like that.
Which is to say that the way I’m feeling in my body, I really have to try to set aside to be a remotely functioning human. I respect the hell out of the somatic stuff, but I just have particular challenges with it. If I really focus on how I’m feeling in my body, then I get almost more panicked and reactive because I can feel my heart pumping and I can feel that I’m not breathing well and it just amplifies that cornered animal feeling.
And I also thought of another Superpower, which is when I’m upset, I’ve had partners think that I’m saying things to hurt them which is not usually the case. I’m saying stuff that I’m afraid of. Like ‘you don’t care about me.’ I didn’t say that to hurt anybody, I said that cause I genuinely am terrified you don’t care about me, because of my past experiences and how I experience everything now.
But I’ve had partners says things in kind of like, anger or frustration at me, and I’m so well versed in that, that it’s almost a Superpower that I don’t even give a fuck. I know you just said that ‘cause you’re mad, because I know what that looks like! So it’s a weird Superpower, but I kind of just be like, you’re bullshitting right now ‘cause you’re upset, and that is a little bit helpful. But I just wanted to reiterate that everybody’s experience can be very different.
Tiffany: One thing that I’m hearing in what you’re sharing is that part of the process of inviting both accountability and safety in relationships involves pre-discussion about what things might look like, and also discussions of accountability after. And I wondered if either of you wanted to talk about what those two pieces look like and what the interaction is between discussions that happen before an interaction that has caused some hurt or some harm, and what it can look like after.
What is the interaction between discussions that happen before an interaction that has caused some hurt or some harm, and what it can look like after?
Sean: To address the before… I think in an ideal world, I would like to set myself up with every relationship this way; if I can talk out and give you an expectation of what might happen when I’m having an episode. To really be able to trust that you’ll be there for me, and what it might look like for you to be there for me.
And if you can’t be there for me, because I know in our group sessions we’ve also talked about what happens when someone needs actual space and their coping is to withdraw when mine is to run in and maybe, you know, working out, ‘okay well, if you do need to go, how do I know you’re coming back? And how do I trust that?’ I think these conversations really do facilitate that sense in myself that I will trust you. But in my experience when I haven’t had those discussions, I don’t know what to expect and so it’s really scary.
And like I said, I haven’t always set myself up for success in all of my relationships so I’m not some like, guru here, but I would like to think, moving forward I would really just try and assert that I need to know you’re not going to abandon me if I have a bad reaction, if I have an episode.
Even if I say things that are really hurtful, like if I say things like “you don’t love me” or “you don’t want me” or “you’re going to leave”, knowing that even if I say things that are really what sound outlandish to someone, they’re very real for me in those moments and when I express those fears, I don’t actually want to lose you, I just don’t necessarily know how to articulate it properly when I’m out of my window.
And then the accountability piece after. I don’t like hurting people, and I don’t know if this is true for everybody in the BPD community but it resonates with me strongly that like, I want to be accountable because the idea of hurting someone is so painful to me that I will work and that’s what my life’s work seems to be… how do I not hurt other people? Because I’ve been hurt, and I know what that feels like, and I never ever want anyone to be in that position.
And so, the accountability piece to me is huge. And it’s not just like a sorry, and then assume it’s over. It’s like, how can I do this better next time when I’m feeling reactive, when I’m feeling out of my window. Like, how do I hold myself accountable for the reactions I’m having. And I don’t know the answer specifically on how to do it properly, but I know it’s something I’m open to. And I know that most people with BPD are open to making amends and really truly doing it, not in just a brush-off kind of way.
Tiffany: Did you want to speak to that, Osden?
Osden: One of the things I was thinking about while Sean was talking that I don’t think I’ve ever said before, but that I think is actually really important and something that I think I do in some ways manage to be upfront about in my relationships, and I don’t just mean with partners, but with friends and with chosen family, the family you can choose, is like… I am a neurodivergent person, and if you’re choosing to be in a relationship with me, you are going to have to be able to hold – able and willing, even if you need me to work with you – to hold some space for my neurodivergence and the different shapes that that can take, and the supports I might need, or the challenges there might be. And I don’t think I’ve ever really said that before, but like, there’s gotta be space for it. If there isn’t, go find someone neurotypical. I can’t be that guy.
And so on top of that, the fact that I’ll be really honest with people that I need space if I’m upset, and that, you know, I can feel this sort of shut down of my cognitive thinking brain, like, I can’t react in good ways and I really try to emphasize with people that I am going to need support or at least space in the times when I’m upset. If we talk about things ahead of time then I can prepare somebody, and I can know if certain things are going to be more or less triggering for other people.
And part of why I brought the neurodivergent piece up, is even neurotypical people do this. Even though we know what boundaries we want to have with somebody, they can be hard to respect when we’re really upset or something’s feeling really challenging and scary.
And I don’t think that’s Borderline specific at all. Maybe we’re actually more adept in thinking about it, because we have to be.
With someone I was dating ages ago, there was an agreement that if you’re getting too intense, I’m going to put my fingers on top of my head and sit in a circle and then you’ll know. And it’s kind of silly, and so it kind of defuses the situation.
And talking about stuff after the fact. One of the things an earlier relationship was really missing was talking about ways that we hurt each other during moments of conflict after I was in a calmer state and could really have a conversation about it. Because it’s hard for me to do much support work when I’m feeling very threatened, or very frightened. But I’m actually really adept at that work, when I’m in my calm and social space. And I’d be so happy to do that work, because, again, I think as someone who’s experienced trauma and abuse and it really affected me, I care so much about whether I do those things to people and I want to show up for them.
Learning from experiences, working together, trying to know what to expect, trying to heal from things when you don’t know what to expect.
I think it’s really important to have honest conversations about what you are or aren’t going to need from someone. Like, I want to be able to talk about suicidal ideation, but I’m not going to act on that because I have safety nets in place, so that I’m going to be safe, and being able to negotiate those conversations ahead of time, or being invited to negotiate information around those things ahead of time, so that I can talk honestly about my life experience without continuing to have to hide it to be safe, is like, amazing.
Tiffany: Thank you both.
What are some of the challenges that BPD introduces into your relationships? And specifically, I’m asking about the challenges that are not related to ableist assumptions or to the stigma around BPD, but some of the challenges that actually comes with Borderline experiences; the things that folks who want to support you should be aware of, that might be difficult in your life or in the relationship.
Osden: The first thing I thought of that I feel really emphatically about, given the current political climate that we’re in, and just like, being a mixed race person who does have neurodivergence and stuff that they deal with, is like, I care so much about injustice in the world, and I’m under the impression given the history of my relationships with friends or acquaintances, or partners or my relatives, that people kinda find it tiresome to be held to the standard of living their life by their ethics.
And so people say they like it, but I think it’s also challenging that I genuinely live life every day by my ethics, and I want the people that I care about to do that also. And so maybe this is a silly thing to say as a challenge but that’s definitely something that’s come up in a repeated way, is like, if an Indigenous person dies and you’re silent about it, I’m going to notice and I’m not going to forget, and I’m not going to like, placate myself about that. Or what’s going on in the States right now, there’s like, white artists that I know in the arts community who are just posting about their art practice like usual and I’m like, I don’t respect you so much anymore, I’m going to remember that. I’m noticing things and I remember them and I genuinely expect people to like, have ethics and live by them, and not everybody’s really game for having someone actively in your life who’s always going to remind you of that.
So that’s not really an ableism thing. But I think it wears on people. Which is a strange challenge, but yeah, one that feels really present in my life right now.
Sean: Thank you for sharing that. I mean that feeling resonates with me. I am going to talk about something completely different, but I just want to say that it does resonate with me.
One of the biggest challenges for me that comes up in my life and across all of my relationships including my therapeutic relationship, is my fear of abandonment. And I literally have the hardest time on a daily basis remembering or feeling, really feeling, safe in my relationships. And constantly, constantly evaluate whether or not someone’s going to leave me.
And sometimes even… like, I went on a date last night, and on that date the person said they’d like to be my friend, and I don’t even know this person yet, and I was like, incredibly reactive after, and I was like, I’m a bad person, it’s because I talked too much about my BPD, because I like to be open about these things, which is also a challenge, but that’s an ableist thing, we’re not going to talk about that right now.
But the idea of losing people in my life is an extreme challenge for me. So yeah, something I think that unfortunately, and I’m getting emotional talking about it, but, unfortunately I think it has impact on how people interact with me.
I identify with the language of ‘favourite person’, and when someone is my favourite person it makes it challenging for both of us to navigate that, because I will have that splitting effect of, I love you so much one second, and I don’t love you the next. And I know that’s really hard for people and I wish I could change it but I don’t know how and it’s a daily struggle for me.
I think a lot about how even in my therapy, I have a really wonderful therapist and it’s offered through provincial programming is coming to an end and I’m terrified about that moment. And the minute something along the lines of therapy ending comes up, I get reactive and that often looks like me dissociating and I get suicidal and it’s really intense, and I can only imagine what it’s like to see me, on the receiving end of that, to see me shut down, to see me disclose that I’d rather die than be away from someone. But I know that people need to hear it, it’s real and it’s really, really hard, and I wish it wasn’t true.
And at some times, you know, I love talking about the Superpowers, but sometimes I also want to sit here and say like, it’s a really difficult experience to have, to be with everyday, to constantly assess whether or not people are going to be in your life. Because I have been left on numerous occasions. Anyway, I’m going to pause.
Tiffany: Thank you for sharing.
Osden: Yeah, what Tiffany was saying, thank you for sharing.
I think that’s really, really important. Some of my biggest fears and reactions aren’t around abandonment, but they’re around fears that people will want to stay in my life and abuse me, stay in my life and neglect me but like, lead me on, keep me around for some reason. And I don’t fully understand, but like how that ties into it for me is like, waking up and seeing that like, another Indigenous person’s dead and knowing that I live in a society where my life is not only inherently less valued… like, don’t read the comments on CBC Indigenous article ever, because it’s basically just like, ‘just fucking kill them, who cares.’
But yeah, you know, waking up today and reading that and trying to choose to like, get up and burn some sage and like, prayer is sort of an inadequate word for it, but like, set intentions over some tobacco and like, laying down tobacco in my yard and trying to do more of a ceremony for everything that’s going on in the world. The other thing is that my head was like, ‘why don’t you just walk into the kitchen and grab some whiskey, who fuckin’ cares?’
And that’s very present and I think that acknowledging that is fucking important because at any given moment of every fucking day, I could keep going to do whatever is the good thing or the uncomfortable thing, or I could implode and it’s fun and exciting and the people who got to be a part of that would probably have a great time for a minute, but it’s very self-destructive.
And that favourite person thing. I struggle all the time to try not to let myself attach like that. One of the challenges is if I go on a first date with someone, I won’t see them again more often than a week. I currently won’t see anyone I date more often than once a week and it’s like, I don’t yet know how to develop emotional intimacy without keeping someone literally at arm’s length so that I can stop myself from becoming that reactive to their presence and how they aren’t available to me. And yeah, I just wanted to add that to what you were saying.
What are some of the ways that folks in different positions can be supportive when these challenges come up? (With the huge flashing caveat that everyone is different, so anything we share right now should absolutely not be taken as a golden rule for how to approach this.)
And does it look different for a friend, or for a partner, or for a family member, or for a service provider? What is some of the advice that you might offer to folks who aren’t experiencing that, who don’t have those challenges happening in the same way but they are adjacent to, or witnessing, or struggling along with, how can they support?
Osden: The very first thing that comes to mind when you asked that, is something that one of my best friends will ask me. I don’t know where she came up with this but she’s fucking great. And early into our relationship, sometimes I’d be venting to her and she’d be like, ‘oh, why don’t you just to this,’ and I was like, ‘uhh, I don’t know.’
And she just started asking, ‘do you want to vent right now or do you want advice?’ And it’s a fucking blessing. Because not only do you want to defer to each person’s own experience, but not every moment’s going to be the same.
And so it’s something that I brought into my other relationships and my other interactions with people, cause it’s just genius! Do you want me to help you try to solve your problem, or do you just want to tell me how you feel like shit about this thing?
And the permission to kind of do either and knowing there’s space for either is so, so good. And I think that…I mean, depending on the kind of service provider you’re seeing, maybe that’s not quite what they do, but I think service providers can often offer a similar sort of set of options. Friends, and partners can do that.
Family’s harder for me to speak to.
I think this would apply to every relationship – Being willing to interrogate harm you maybe are causing, and where you’re coming from, and being self-critical and I think that’s something that is like, the hardest for family to do. And often very hard for partners to do and sometimes just under the sort of guise of professionalism, not something that service providers think they have to do. And as someone with a variety of intersections, that I’m often dealing with that affect when I get upset, or how I feel about things, that’s something I feel really aware of.
I keep glancing at this line in my notes that I highlighted. Patience is a big one too. The thing I highlighted says: When I’ve been hurt, it can be like incredibly hard for me to feel safe again.
So what I was saying about having a history of people keeping me in their life and being like, ‘aw, I love you,’ but also abusing and neglecting me, is part of where a lot of my fear reactions come from, and are rooted in.
And when somebody hurts me, it’s really hard for me to feel safe again, to get to feeling safe again, and so it’s really important that people be willing to be patient with me while I try to get back to that point, because I’m not happy that I’m not back at that point quickly, either. I’m not. I think those are really important things to remember.
And just kind of finally, as somebody who had conflict with a friend who also has BPD recently… it’s important to be honest and humble and willing to apologise, like you know, I caused some harm that was pointed out that I was unaware of at the time, and if I know what I’m doing, which I think maybe I do, then like, being honest about where I was at, and how that happened, and that I am very sorry and I don’t want it to happen again, that I’m going to try to make things work differently in the future, is a really giving spot to start with and what I would want from anyone.
Sean: So I’ve been thinking about how having difficult conversations, whether it be my therapist telling me that we need to end our session soon, or a partner telling me I’ve harmed them a certain way, there are definitely dos and don’ts that apply in the light of being in a very digital age.
I really struggle with the start of a conversation that’s not guaranteed to be finished. And if something is brought up that could potentially be triggering to me or someone, and it’s just kind of flippantly thrown out there and I don’t have the ability to resolve that with you, that will send me into emotional distress that can last for days. And so being mindful of how you approach difficult topics, so, you know, maybe starting it by saying, ‘this might be something that’s going to be really difficult for us to talk about and that’s probably going to bring up a lot of emotions for both of us, what would make you feel safe right now and how can we talk about this hard thing without like, sending you into distress?’
I think it’s easy for me to say that right now and it doesn’t mean I’m always going to react the same way and I’m not always going to be able to hold it together, but I know that if it doesn’t just like, get sprung on me… and some people don’t notice they do these things, but like, don’t send me a text message in the middle of night if you’re not going to be awake in the next morning to talk to me about it. Like, I absolutely cannot handle that. And it will derail my entire day, maybe days. So, you know, being able to have conversations in the moment and when you need to have that conversation to be fully present for it, and don’t tell me to leave, don’t tell me you need to come back, don’t put your phone down and forget about it. This is more specific to right now because it is a little bit more complicated to have human interactions, but I’m thinking specifically around some of the challenges that I experience. Following through is a really, really, big thing for me.
And like Osden said, when someone hurts me, it’s really hard for me to trust them again. And so if there is an apology or if someone says, ‘I will do better’, then actually doing better is really important. And that will reinforce the trust I have for you.
It’s okay if people screw up, I do too, but being able to acknowledge that and acknowledge the feelings you’ve hurt and the harm you’ve done and then really showing up to make it better is so important. I can’t tell you the amount of times there’s more harm to hear ‘I will do better’ and then just not doing the thing. That’s more harmful than the first time it’s happened.
Tiffany: Let’s take a different direction and talk about medical discourses and diagnosis, because that was a question that came up from someone who’s attending, and it’s something that we’ve talked about in the group. Questions about whether folks look for or seek a formal diagnosis, what the choices are there, and also what the whole discourse around BPD means in medical contexts. I think that’s something for service providers for sure, but also for friends and family and partners to understand, because this is really impactful in people’s lives.
What would you say about whether folks look for or seek a formal diagnosis, what choices are there, and also what the discourse around BPD means in medical contexts?
Sean: I think that it’s great that Osden and I are both talking about this because we have different experiences with diagnoses. I’m someone who’s been formally diagnosed, and it wasn’t a diagnosis that I was looking for when it happened. I was absolutely looking for a diagnosis, though, and something that I found incredibly helpful in that journey, when I finally got to a practitioner who I feel sees me, is that she took a year to diagnose me. It took several sessions, and it took a lot of conversations with her, before she very gently said, ‘I think this might be something that is truth for you, what do you think?’
And I found that, although it was obviously very intense to be presented with, it was actually kind of an empowering experience, because I felt like after so many appointments with different people and so many failed therapeutic relationships, this person was really trying to collaboratively come to a decision with me. And this is my psychiatrist, just for reference.
I also think that in those moments, recognising that this diagnosis is a big deal and it does go on your medical records, [asking], ‘are you comfortable with this?’
I didn’t have that conversation, and I think I would’ve appreciated that at the time, but that’s something that comes up for gender all the time, they’re like, ‘do you want me to write this down right now?’
And I think I would’ve liked the opportunity to have had that negotiation with my healthcare providers. I think, you know, without [the diagnosis] I don’t have access to certain programs. Right now I’m on a waitlist for a Dialectical Behavioural Therapy for BPD program and without that formal diagnosis, I wouldn’t have access to that.
But I really want to emphasize that it’s a practitioner’s responsibility to do it carefully and ethically, not just throwing out diagnoses to people without adequate support. I mean, this person’s not in attendance today but we know of someone who experienced that diagnosis just thrown at them and that’s not safe. That’s not a safe way to talk about this diagnosis, because there is so much stigma and so much discrimination associated with it.
And within our families and friendships and interpersonal relationships, I really challenge people to also look for resources that are not about how people have endured us, because goddamn, there is a lot of that out there, and it is so hard for me and was hard for me in my relationships to have people be like, ‘well I read this thing about this person who had a girlfriend with BPD’ and I was like ‘great, like, what do you want me to say about it?’
Like, not only is there like, a million different ways that people experience BPD. It’s not helpful to me to know that that’s what you’re reading because it’s often the case that those resources will say really, really stigmatising things about my experience that are just fundamentally not true. You might experience my episode very negatively but it doesn’t mean that I’m a bad person, and so to only read those resources from other’s perspectives is super damaging.
So I’m really thankful that Tiffany orchestrated this resource, because without it, there’s really nothing that exists.
Osden: Ahh! Just like, so much agreement for starters.
And then yeah, about the resource, even though I had involvement in that, re-reading it recently when we were working on it I was like, this is so fucking cool that this exists, damn! Because, yeah, it’s almost comical when people in my life are like, ‘oh, BPD, can you send me a resource you like about that?’ And I’m like, ‘not really.’
In regards to the diagnosis and clinical experiences, I talked earlier about having to kind of perform being well to be safe when I was quite young. Even when I’ve now been trying to express to people, over and over and over again that I’m not well, I haven’t been able to get people to take me seriously.
And you should be able to get people to take you seriously without like, having to attempt to take your own life or wind up in a hospital or a ward, and they’re like, ‘oh maybe you’re upset.’ Which has happened to people I care about and that’s when they get genuine help and it shouldn’t take that.
I do not have a formal diagnosis of BPD. I have spent years talking to therapists wherever I could access ones through school or work, because therapists are expensive, and describing anxiety attacks, so like, forget BPD, I also struggle with really strong anxiety and I am at this point in my life on some meds that I find really, really help with that. And having my anxiety more under control makes managing my BPD a bit easier. And that’s fucking great.
But I spent years trying to get someone to take me seriously about the anxiety attacks I was having and I was literally self-medicating when I was in grad school with like, if I got triggered to like a panic mode at school that day, I would have a shot or two of whiskey when I got home, cause it was the only thing I had found, because no one would take me seriously and no one would prescribe me anything or send me to someone who could that would help me get away from that feeling of my heart just fucking pounding in my chest. And that for hours and hours on end is so exhausting.
So, see, I made it a long way through my life having a lot of struggles and not being able to get anyone to take me seriously about them, and I came to BPD through a very dear friend of mine spending some time with me. And they at the time had been very out to like their friends and people in their life about their BPD diagnosis and were really habituated to apologizing for it when they spent time with me. And so they’d talk about a way that they view the world or a way that they experienced something, and they’d apologize immediately and then be like, “sorry, my BPD…” and I was like ‘wait, no…but like what you just said is exactly how I think about that and that makes perfect sense to me.’
So we spent all this time talking about it, like our trauma and stuff. And you never want to step on somebody’s toes or claim something that’s not yours, so like, I waited and I did some research and there is this checklist of symptoms, it’s like, ‘if you have 5 of these 9’ and I’m like I have all 9! [thumbs up] Neat! And I eventually messaged them and was like, ‘hey, I don’t want to step on any toes but I think maybe BPD?’ And they were like, ‘oh my God I was thinking that too but I didn’t want to offend you.’
And then, I swear this is relevant to the question [laughs], it gave me language to start finding things to interpret the world in a way where I wasn’t just tearing myself apart, like, why can’t I be okay? Why can’t I treat people like the way that they think I should or be calm when they do things that I think are really terrible? And that was such an amazing tool to be given a framework for understanding my experience of the world as neurodiverent. It allowed me to see that an inconsiderate thing someone in my life did that I’m like, ‘how could you do that I literally feel I’m fucking dying because you did this inconsiderate thing,’ knowing it wouldn’t make them they’re fucking dying made it easier to understand how they could do it. And that was so helpful. And it just opened the door to trying to deal with how I am instead of hating how I am.
And I think that I could, at this point in time, seek a clinical diagnosis but I won’t because I know from the people I love’s experiences that if I had a clinical diagnosis, I would be more likely to be discriminated against in regards to different medical care, painkillers, saying I’m in pain, if anybody would take me seriously or think that I’m just seeking stuff. I don’t know if you can tell, and depending on where you live, this may be more or less relevant but I have my head shaved and I have a bunch of tattoos and I work in the arts. I’ve already spent like a decade getting discriminated against by the medical system as somebody who’s going to be ‘drug seeking’ and like, being in pain and not getting painkillers when I need them and stuff.
There’s no fucking way that I would risk another reason to dismiss the problems I’m having on my medical record on top of how much I’m already being profiled. And I’m an Indigenous person, I’m not like, visibly Indigenous, so whether or not people know that depends on conversations we’ve had, but that’s a major factor for people to dismiss me saying I need help if they know. That’s my rant on that that I think answered the question.
Tiffany: Yeah, absolutely. And I think we say this in the resource, and because I do work as a service provider, it just feels really important, but I feel like any of us who hold that kind of structural power in either medical healthcare or mental healthcare, but also teachers, professors, social workers, we have an obligation to stand up against that injustice that leaves people more vulnerable if they seek a diagnosis. And that leaves so many people who have not sought out a diagnosis but have it slapped on their file, which we know has happened to multiple people in the BPD Superpowers group, including experiences like receiving a diagnosis of BPD and not being told that that has been put into their medical file.
So these kinds of things happen and people should not have to go through the kind of calculus that Osden is describing about figuring out whether they’ll be able to access help if they receive a diagnosis that will allow them to access other help like Sean was talking about. Like this is a rock and hard place situation that service providers are responsible for and we need to challenge.
Osden: [to viewers] This is maybe cheesy, but I’m grateful for the intention to bring better understanding to the relationship you may have with folks who have been diagnosed or who identify with Borderline. So grateful for that listening, and future reflection that should follow it and just all of that engagement and that willingness to try to be better for the people in your life.
Sean: I was going to say something really similar. Thank you so much for being here, everyone. And for witnessing.
I also want to thank Tiffany for creating these spaces and giving us the opportunity to have what I think is, even though it’s difficult and even though I got emotional, quite an empowering experience to be able to talk about who I am and how I navigate this world and give me an opportunity to advocate for something about myself. I’m not really good at doing that, and so, thank you to everyone.
Find the other resources created by the BPD Superpowers group:
THE SUPERPOWERS o The Superpower of Community (and community care) o The Superpower of Showing Up o Resilience o Endurance o Dialectics as a Superpower (holding multiple true stories) o Empathy and Compassion o The Superpower of Quick Turnaround of Emotions o The Superpower of Being Able to Get Out of a Bad Situation o The Ability to ‘Chameleon’
From the document:
This document follows a conversation, facilitated by Osden Nault and Tiffany Sostar, whose goal was to center the voices of folks who identify with BPD (either diagnosed by a professional or self-claimed), and to shift the dominant narrative about Borderline Personality Disorder. This document includes quotes from participants as well as quotes from BPD folks who were not at the event itself.
This event was the result of both Osden and Tiffany noting the lack of BPD voices in the resources available about, and especially for, the BPD community. So much of what is available includes harmful stories about what kind of people have BPD, and how difficult and even dangerous it is to be in relationship with them. These stories obscure the complex lived experiences of BPD individuals who have valuable insider knowledges into how to navigate big emotions and the ongoing effects of complex trauma.
Because we live in such a complex, overwhelming, and traumatizing social context, we hope that this resource might also provide help and insight for folks who do not identify with BPD but who have experienced complex trauma or are living with overwhelming Feels.
We also hope that this resource will help folks who are facing the injustice of inaccessible mental health supports. We recognize that the BPD community faces intense stigma and is also significantly underserved by medical and mental health professionals. If you have found this resource because you haven’t found anything else, we hope that it helps. You are valid, your experiences are valid, and no matter how much you may struggle with your big feelings at times, we know that you also have skills, strategies, superpowers.
There’s so much more that we could have put into this document, and we hope to continue this work both within the BPD Superpowers group and through engagement with other folks who identify with borderline personality disorder (either through self-identification or through a formal diagnosis). Maybe there will even be a book!
Acknowledging the political climate in which we are releasing this work and the intersections of oppression and mental illness / neurodivergence.
At this moment, Black people in the USA and marginalized groups worldwide are mobilizing against white supremacist, racist, and anti-Black violent systemic oppression. We are unequivocally in support of this ongoing struggle for more just futures. In releasing this document at this time, we wish to acknowledge the compounded effects of anti-Black racism, white supremacy, colonialism, intergenerational trauma, and many more forms of violent oppression and marginalization on individual mental health and neurotypes.
An Indigenous participant has shared:
One of the first definitions of BPD I saw described it as resulting from a “genetic predisposition” and trauma. I immediately thought about my own family’s intergenerational trauma. At a point in time when we know ancestral trauma affects us to a genetic level, I wondered how the history of colonial violence plays a role in my present day neurodivergent experience.
We see the effects of violent oppression on physical and mental health, spanning generations and present today. In what Angela Davis has referred to as a “very exciting moment,” and about which she says, “I don’t know if we have ever experienced this kind of a global challenge to racism and to the consequences of slavery and colonialism,” we acknowledge that there is a great deal of ongoing work and healing to be done. We release this collective document with free access and the hope that it will aid in the future and ongoing well being of oppressed individuals and communities.
With love and solidarity, The BPD Superpowers group
Content note: reference to sexual assault, colonial violence, trauma, substance use
The BPD Superpowers group met in a video chat on April 28, 2020 to talk about the intersection of the BPD and The Pandemic.
This blog post brings together some of the wisdom shared in that conversation. This is part of an ongoing project, and our hope is that this post will offer something for everyone, whether you identify with BPD yourself, have friends and family who identify with BPD, or are simply having a hard time in the pandemic. We hope this will help you feel less alone, and offer some hope and some potential strategies. Some quotes from the chat have been paraphrased.
This conversation took place digitally, but we are still all on Indigenous land. Our group included participants on Treaty 7 land, which is the land of the Blackfoot Confederacy, including the Kainai, Siksika, and Piikani First Nations, the Stoney Nakoda, including the Wesley, Chiniki, and Bearpaw First Nations, the Tsuut’ina First Nation, and the Metis Nation of Alberta, Region 3. Our group also included folks on the traditional territory of the Haudenosaunee, Wendat, and Mississauga of the Credit First Nations, which is governed the Dish With One Spoon Wampum Belt Covenant, which precedes any colonial treaties on this territory, and invites everybody to share in what this land has to offer, which is represented by the idea of a dish with one spoon in collectively caring for the land together. Our group included settlers and Indigenous participants.
At the time of our meeting, the Tiny House Warriors and other land defenders had been attacked, with a truck driven through one of the tiny houses, and another land defender camp burned down. It is important to acknowledge this, because the pandemic has not paused racist violence in Canada, and the effects of the pandemic impact different communities in different ways.
Panic and the Pandemic
“For a lot of people experiencing various degrees and intersections of marginalization, the pandemic is kinda just another hit. Whereas people with more privilege, who may never have experienced a complete meltdown like this, they don’t know what to do. But for me, my life feels out of control a lot of the time, like I’ve got constant whiplash from my emotional reactions to things. And I’m all over the place right now. They’re all big feelings. And I feel like we can teach people a lot, as people who have survived and continued to survive in our ongoing existence with all these big feelings, so much of the time. It’s not specific to BPD, but a lot of BPD people have insider knowledge into how to respond to panic. A lot of people are in panic mode right now, inside this time, and they don’t know what to do. But BPD folks already know all of these really good ways of reaching out, and a lot of this is not new to us. We’ve already had to find our communities online a lot of the time.” – Kay
Returning to childhood skills
“I feel like I lot of my coping skills are really thriving right now. I’m still having bad days, up and down, but I feel like I’m using a lot of the things I did as a kid. In times of crisis and panic, when I’m constantly on edge, I just learn to do things. I pour myself into what I know keeps me grounded. I’m really drawing on how studious I was as a kid. I’m pouring myself into my academic work (which sounds very nerdy but it’s true). I used my homework (usually math) to escape. I really enjoyed it and it was when I felt safest. Now I’m just using my thesis writing as a way to create routine – I write for at least an hour almost every morning starting at 9am.” – Sean
Navigating the return of trauma memories
“When the pandemic started, I wasn’t too upset, didn’t feel the need to panic, but was also sort of noticing people saying that they were having a lot of old trauma come up. And for a couple weeks I was grateful that I wasn’t experiencing that. And then I was. And a lot of my trauma is based in my early home life, a lot of my trauma also involves like, sexual assault, which has resulted in certain social coping mechanisms that involve feeling like I have a lot of control over who has access to my body and my sexuality through things like being as casually promiscuous as I want. And there’s no promiscuity in social isolation. And there’s no, kind of through these actions this like, affirming this control over my body that I had found. Being brought back to all your trauma, without your coping mechanisms… I feel like such a raw nerve right now. And those are things that maybe suck, but I just wanted to put them out there ‘cause I’m also sure I’m not the only experiencing that kinda shit.” – Osden
“This collective sense that everybody, not just folks with BPD, are struggling has been a big comfort. Everyone else is starting to understand what it’s like to feel lonely like this.” – Sean
Recognizing and naming our skills
“Maybe as folks with BPD, especially for folks who have been able to do the work of kinda setting certain boundaries because we have enough of a familiarity with our symptoms or challenges, boundaries may be one of the areas that, I don’t know, I imagine we do kind of have a superpower here. Like as much as I’m struggling with some things, I’ve been able to maintain the level of respect that I expect from people I’m gonna date. That’s a place that I still do have something healthy that I built prior to this going on.” – Osden
“It is difficult to hold those boundaries, especially when you care very deeply about people. Having to choose the health of the people that are in my house as well as myself, over someone that I love and cherish like a family member. It sucks. I had to do that even though it was really difficult.” – Kay
“I was thinking about how we have those conversations about risks and health, and how we’ve been having those conversations throughout the pandemic. And maybe this is also one of my coping things, as someone with a history of being sexually assaulted, I’m very, very consent oriented and I’m also very anti STI-stigma. I’m pretty involved with the queer community in Toronto, we have these conversations really often. And I was thinking about the kind of risk mitigation that comes into talking openly about balancing mental health and physical health and all those needs, that maybe in some ways gives us toolsets to say, ‘no, sorry, you’re taking like, a risk that I’m not okay being exposed to, so I’m gonna have to set a boundary here.’” – Osden
“Something I’m learning right now is that I am capable of advocating for myself.” – Sean
“It’s funny because as people with BPD, one thing that we always get stuck to us seems to be the all or nothing type thinking, or the black and white polarised thinking, and it’s like, we know how to find the grey. I keep my feelers out, and I make sure I’m listening for people who need help, because I have connections to people who can deliver groceries, and I make sure that I’m listening to my community. I might not always talk within my community, but I’m always listening. And I think that we always find ways to find that middle ground. It’s beautiful.” – Kay
Here are some of the things that people in the BPD Superpowers group are doing to respond to this difficult time:
Taking the time to acknowledge the feelings, even if they seem immense and impossible. Having a validating conversation with ourselves about what is happening.
Defaulting to the assumption that your feelings come from somewhere real. If you are upset, there is probably a reason you’re upset. Even if the way those feelings show up isn’t what you prefer, assume that the feelings themselves have some valuable information to offer. (This is especially important if people around you seem to be defaulting to the assumption that your feelings are not coming from somewhere real.)
Turning to people in ways that feel accessible. This might mean texting if video chatting or phone calls are too intense. It might mean phone calls. It might mean letters! It might mean creating a “pandemic pod” of people you see. Turning toward people in whatever way feels possible.
Recognizing that when the ideal solution is not available, the available solution is the right one. This might mean using coping strategies that we wouldn’t otherwise use, leaning on or staying connected with people we would otherwise distance from, or using other strategies that are less preferred, but that get us through a hard moment. “Lean where you can lean!” You can even write yourself a permission slip, if it would help.
Going for a run or doing something else to get your heartrate doing something different than the panic rhythm.
Participating in affirming group spaces. These might include identity-specific group spaces (like an international chat group for queer and trans folks to share pics and affirmation), or interest-specific group spaces (like anti-capitalist cat groups).
Using creative ways to alleviate sexual tension within the restrictions of physical distancing. Taking and sharing sexy photos can be one way to maintain a connection to your own sexuality and to a sense of control over access to your body, and a way to feel playful and connected.
Writing poetry, especially poetry that holds space for rage and horror.
Taking time and space from relationships that are experiencing conflict. Reminding ourselves that taking time and space doesn’t mean we can’t come back to that relationship (or that the person on the other side can’t come back to us). This is especially difficult and important when we’re all so aware of how much we need each other and how much depends on the few relationships within our pandemic pod.
Sometimes taking time and space doesn’t help, and we might ask the person we’re experiencing conflict with to stay and talk through what’s happening. Communicating our needs when we’re able, in the ways we’re able.
Recognizing how our specific context influences what feels possible – being hungry, tired, drunk or intoxicated – all can influence which strategies are available to us in responding to panic.
Finding small moments of joy. Baking, creating, being a personal cheerleader for friends. Even delivering cocktails or mocktails to friends, and being able to say, “everything outside is collapsing but I’m gonna sip this dainty, fancy little thing.” Whatever brings you some joy!
Trust yourself. “Finding your way to survive, whatever that looks like right now, you’re doing it. You’re fucking stellar at it.” – Kay
Image is a person sitting on a couch, watching tv. On the tv is a stick figure with the quote, “That’s what friends do, they stand by each other when there’s trouble. – Gabrielle.” Beside the tv is the name of the project, Zine: A Warrior Princess. The quote is from the show Xena: Warrior Princess, spoken by the character Gabrielle.
IMPORTANT NOTE! The deadline for submissions has been extended until there are enough to create the zine – hopefully end of July, 2020. The submissions that have come in so far are absolutely gorgeous. Be part of this project! Submissions so far include writing about Final Fantasy, Groot, and the musical episode of Buffy, Once More With Feeling. So good!
I’m ready to start working on my next zine project!
This one has the potential to be a little lighter, a little more playful.
This zine is about how pop culture is getting us through this time.
What is this zine about?
It’s about the lessons we’ve learned from our favourite tv shows, movies, comics, and books. It’s about how pop culture can invite us into an alternate world, and how these worlds have been safe and comforting spaces for us for many years.
It’s about the archetypes in the Princess Bride allowing us to see ourselves in a playful and generous light.
It’s about Buffy surviving a new apocalypse every season, and what hope that might offer for us as we face this particular apocalypse.
It’s about Steven Universe and She-Ra and Aang and Korra and Kipo and The Magicians and Elle Woods and Kamala Khan and Miles Morales and America Chavez and Kimberly Kane and Starbuck and Furiosa and Marge Gunderson and Elastica and Zoe Washburne and Veronica Mars and Minerva McGonagall and River Song and The Doctor and Jane Eyre and Phryne Fisher and Jo March and Alexander Hamilton (and Eliiiiiiiiiiiiiza) and Fem Shep and so many others, and it’s about how these characters, and the worlds they inhabit, the worlds they invite us into, make it more possible for us to get through the pandemic.
It’s also about pop culture personalities and how we navigate our relationships with celebrity (of whatever magnitude) in ways that make it more possible to get through the pandemic.
Prompts to get you started
What shows/books/comics/characters/etc are getting you through?
Are you re-engaging with old favourites or discovering new ones?
What are the gifts of these pop culture offerings? What skills have they taught you? What values have they nurtured in you? What hopes have they sparked? What comfort have they offered?
Where did you discover them? Does appreciation of these characters or worlds or creators connect you to a community?
Do you share these shows, books, characters with others?
What have they made possible in your life?
What have they made possible in your pandemic life?
I think this will be a fun project and I’m really excited about it!
When and how to submit
I’ll be accepting submissions until the end of June, and hoping to share the zine by the end of July.
This is the video and transcript of an interview with Kay and Sam, which took place on August 24, 2019, in Calgary Alberta, as part of the Recognizing BPD Superpowers event.
Content notes for references to suicidal ideation and attempts, substance use, hospitalization (including involuntary hospitalization)
This transcript has been edited. It’s long, but I really hope you’ll read it or watch the video! At the event, I was incredibly moved by the tender, precious vulnerability shared here, and by the rich stories of survival and persistence. Far too often, Borderline Personality Disorder is described through a lens of pathology and stigma, articles are written about people identified with BPD, rather than by people identified with BPD. The BPD Superpowers project hopes to change that.
This interview is Part Two of the Recognizing BPD Superpowers event. You can read the text of Part One, a presentation on BPD, here.
Kay D’Odorico is a queer, neurodivergent human of Indigenous and European descent. They advocate for Sex Workers and own and operate their own perfuming business full-time here in Mohkinstsís.
Sam is just a human pursuing her best possible self. She is passionate about her recovery, her intersections, and wishes to hold space for others while creating it for herself.
Tiffany: I have the benefit of having known both Kay and Sam for years, and having worked with them in a variety of contexts. They’ve both been involved in each stage of this project.
So, Kay, you’ve been part of the project since our first narrative conversation, and I was wondering what was it that brought you to the group and what are your hopes for the project as it moves forward?
Kay: What brought me to the group, and really pushed me forward actually, was Osden, the co-facilitator who’s not here with us. They’re a very dear friend of mine, and seeing that they were so invested in this idea gave me a little bit of brave [laughs] to out myself, basically, to a roomful of strangers that I didn’t know. And it definitely was 100% worth it, otherwise I wouldn’t be here. For moving forward, I hope to continue to be able to facilitate conversations like this and educate a larger span and demographic of people, because I think it’s valuable work that we’re doing.
Tiffany: Yeah. I heard you say that Osden helped you find some of that bravery that was needed, and I’m curious, why was that bravery required? What is it about outing yourself in a roomful of strangers that required an extra dose of bravery?
Kay: Because I’ve experienced a great deal of bias and unfortunate circumstances because of naively telling people about my diagnosis before I really understood the amount of stigma that’s actually out there. I lost my job because I told my boss about my diagnosis, and I lost my apartment because I told my super about my diagnosis, so I had a lot of fear of rejection, like maybe I wasn’t going to be able to access certain parts of the community, or even my relationship with you, so. That was kind of the fear that was gripping me.
Tiffany: Mhmm. And what was it that you were hoping for or valuing that allowed you to hold onto that bravery and show up anyway?
Kay: Well I know that Osden is super kindred, a kindred spirit of mine and a kind witness, if you will, and I was hoping for all of those; a community that’s not forged on the psych ward.
Tiffany: Sam, I am curious about the same thing, but I’m also curious as well if there was anything in what Kay said that resonates for you.
Sam: Yeah, I think for me, I saw your posting about it and something in me just screamed ‘yes!’
Traversing diagnosis is a scary thing to do and disclosure consequences have been a huge part of my life. I’ve lost work, I’ve lost friends, I’ve lost relationships, even with myself, therapists, whatever have you. So then I was like, okay, ‘superpowers.’ It really got me into a place of curiosity and [feeling] strength-based. I tried to approach a therapist to create community like this and they werere like ‘no, it costs money, it can’t be free.’ So that puzzled me and then there you were. And I was so excited to just jump in. And I relate to what Kay said a lot in just the consequences of sharing and having to add some bravery to that. And it was something I was looking for, like how do I empower this part of me? How do I find that? And how do I learn from others who are doing the same?
Tiffany: Yeah. If you were gonna give a name to whatever it was inside of you that was screaming ‘yes!’ do you know what you would name that part of yourself?
Sam: I think just like…I would name it like, human, I don’t know…just like the human inside of me was like ‘Yes! Yes! Yes! Yes!’ there’s more to me than all these layers of diagnosis that have been thrust into me. Just the raw basic self.
Tiffany: Yeah. That, sorry…I should have better words, but I’m just like, ah, the human part, I love that! [laughs] And it’s interesting because I think in a lot of the discussions of BPD there is a dehumanising that happens, there’s a diminishing of the ability to connect or the ability to have…Rebecca Lester talks about it as like the urge towards health and happiness…I don’t think she used the word happiness, but. Yeah and I think it sounds like that’s what you’re talking about.
Sam: It is. That’s very much it.
Tiffany: One of the contributors to our project, Dottie Ayala, shared the following on her facebook page and has given us permission to use this quote in the resource.
So Kay, I was wondering if this resonates with your experience, and how you’ve learned what works for you and what doesn’t when accessing care and support, and also in navigating the ways in which BPD might show up in your life or in your relationships.
Kay: Well, I mean, I was kind of forced into it in a pretty aggressive way because I had a full meltdown, like with suicidal ideation and then follow through. So, I committed myself and I ended up in psych emerg for several days. And they formed me. And for anybody who has any knowledge of the system and how to access resources, being formed is when they basically take away your right to leave. So, I had committed myself willingly to the hospital because I felt like I was a danger to myself but then they formed me, which made me incredibly angry because they didn’t tell me what was going on. They used scientific words to basically tell me that I had no rights anymore, and I couldn’t leave when I wanted to, and then a week later, I was moved to this ward called short stay, and I still didn’t know what was going on and unbeknownst to me, the doctor had actually slapped the BPD label on me like, the first day of psych emerg, but nobody told me. And then I was put on short stay, which is the BPD ward at the Peter Lougheed. So, I was like, there’s an inordinate amount of people on this ward with Borderline Personality Disorder, this is really weird. And then like, I sit down and they’re like ‘you realise you’re on the Borderline ward and you have been diagnosed with Borderline’ and I was like, nobody told me!
And so I fought with the doctors every single day, because it was something that had been just completely just like…it almost felt like it was suffocating and crushing me. And like, my response to that was to not read any of the stuff that they gave me. And to like, basically shut everything out that I could, like to protect myself. And then when I did read it, it tore me to pieces. So that was kind of my experience going into it, with BPD. And so, my way of dealing with that has been, oh man, reading the things and realising that some of them do fit, like some of it did fit and some of it didn’t fit. And that also changes all the time. And I don’t talk about BPD with my family doctor. At all.
Tiffany: It’s interesting because I have been doing a fair bit of research because we’re creating a resource, and one thing that is written about fairly regularly is A: the disdain and contempt that a lot of mental health providers have for folks that have a BPD diagnosis, and B: a fairly normalised pattern of applying a diagnosis and not telling the person. So that experience of being diagnosed and then not having that diagnosis shared is common enough that it shows up regularly in papers about how clinicians engage with folks in the BPD community.
I don’t understand how that could be considered a helpful thing, but it is a thing that happens, so. I’m sorry you had that experience.
Kay: Me too.
Tiffany: The thing that really resonates for me in that, is that when you answered the first question, you said that you wanted to find community and to find people that you could share conversations with. It sounds like your first conversations about BPD did not include much kind witnessing. Was there a moment or experience that helped you hold onto the idea that you could find community despite those first crushing experiences?
Kay: Yeah. So, on Unit 37, you’re not allowed to make friends. They discourage you from talking to other patients, and there’s usually somewhere around 15 people and you’re in a really small space and you all have rooms, and you have a roommate, but you can’t sit on your roommate’s bed. You can’t stay up late past bedtime talking to your roommate. You’re not allowed to touch. There are really, really strong rules about it, [they’ll] actually get security in there, and I would sit on my roommate’s bed, just like as a [holds up both hands with middle fingers up in a ‘fuck you’ sign] [laughs] just to the system in general. It’s like, stop discouraging intimacy, it’s dehumanising. So, I’d sit on my roommate’s bed and we’d just like hold each other’s hands because it’s traumatic, being there. Engaging with these health care professionals that very, very clearly hold great disdain for you, and exhibit racist tendencies, and bigotry to the max, so I fought that at every chance I could.
When we went out for cigarette breaks, we would hug. Whenever we were out of eyesight or earshot, we would make friends and we would bond. And I made a best friend who I still talk to and I still support. She moved to Toronto to pursue becoming a musician and she was the first inkling of the beautiful little sparkle of community that I could identify [with] very strongly. It evoked a love in me that I didn’t know I had, because it was this shared experience of the ward, but also the world. So you get off the ward and then it’s the real world, and like, they try to set you up as best as they can, but you’re never gonna get ready for what’s gonna happen, so, yeah. We were there for each other when it was the world instead of the ward.
Tiffany: I love that idea of BPD solidarity like against oppressive systems and within hostile institutions.
[turning to Sam] Was there anything in there that resonates for you? How did you find what works for you and what doesn’t?
Sam: Yeah, I had unique experiences, as each person does. My diagnosis came with several. I did feel part of the diagnosis process. I had been struggling immensely in many aspects of my life and my career, and I was at the point where I was in Edmonton, and I checked into a hospital. They kept me for a day, like different perspectives, you know. Often the psych teams come at random times, they don’t really inform you why or how they’re doing it. And opinions can vacillate so extremely. You know, so someone said ‘oh, you’re just having a nervous breakdown, this is normal, this can happen.’ And they’d send me home. And I would destabilise more and come back, and they would tell me…I had one professional say ‘you are absolutely a danger to society and you need to stay for a very long time.’
And that was very confusing. Because one person, two days before, said no this is normal, the next person says you’re unstable.
So, I was formed as well. And I was formed for a month. And in that time, a lot of journey happened. I learned with the psychiatrist I was working with, he was really good at being informative, but also still dehumanising, so I had the opportunity to have my mother come and have discussions and kind of engage in conversation. But at the end of the day, I was still given a diagnosis that I was not comfortable with, and it took a long time.
In my situation, I had the opportunity in a very privileged way to access resources without a lot of financial burden myself. I went through a lot of different types of therapy. From exposure therapies, to DBT therapy, to so many different types; CBT, what have you, I have done it. And in those experiences, I can really relate to Dottie that trusting a therapist is super scary. I still struggle with it and I’m still very involved with therapy.
It gets to a point for me where I don’t know what life is anymore. I only know how to psychoanalyse and can associate well ‘this is BPD, I’m BPD,’ you know. There is no room for me to have any sense of just ‘I’m a human being with human experiences’ and I don’t trust therapists super freely, because I either feel like they under relate or over relate, and I’m learning there’s a delicate balance. There gets to a point for me, where therapy is only so useful. And there comes a time where I would rather just experience society and those relationships kind of on a grass roots level, more of a narrative direction than a clinical environment.
Though I have to say, there are so many aspects of each type of therapy that are little golden nuggets that I can take away. I do feel DBT was developed in a very obscure way and Marsha Linehan, who’s the founder of these principles adopted it from many, many places, from CBT, from Zen Buddhism, and kind of incorporated her own brand. But I feel like it is essentially a part of capitalism. You know, to have a DBT program, you must have this much and do this. In Calgary, access to free DBT is 17 months’ [wait] at least.
The program from other’s experiences has been sketchy in my perspective. I went privately and it cost me an arm and a leg. Again, I had the opportunity to have funding in that way so I was very, very, very privileged. I think that there are so many little nuggets that DBT taught me, you know, like distress tolerance, when I was so suicidal that I was pushing people away or they were just literally scared to be near me because I was so unable to regulate that. And those little things really did help.
But I think there comes a time where I’ve outgrown a lot of aspects of therapy. And I’m tired of pathologising human experience. There’s so much more and this group, this Superpowers, has really allowed me to like, let go of the need to have BPD as my identity and simply relate in a way that’s different for me. And there’s some train of thought that BPD does not actually exist. The symptoms of behaviours are still of course valid, but that it could be a form of Complex PTSD rather than this ‘personality issue,’ and I think identifying something wrong with your core foundation is really fucking harmful.
Tiffany: Mhmm I would agree.
One thing that really jumps out at me, actually about both of your stories there, is that at the beginning of these journeys there was a moment of self-awareness and an action of very active self-preservation. Both of you took an action of checking into a hospital and then were met with, like I know that the stories are different, I want to honour those differences, but there’s also a shared experience of self-awareness and cherishing your own life enough to take that action to preserve it, and then running into what sounds like in both cases, a system that then really dehumanised and diminished and didn’t acknowledge that active agency, and that choice of doing what would make your life possible. So, that’s not a question, but I just wanted to note that, because that feels important.
Kay: I never thought about that. [laughs]
I mean, I felt that and I knew it, but I hadn’t heard it, so you’re right. We did do that, and nobody said thank you for doing this, for sticking around even though it’s scary as hell. [points to Sam] Thank you. [Sam points back and says Thank you]. That was my aggressive point. [laughs]
Sam: I just wanna comment on that. As someone like, I still struggle with ideation, not so much now, but it’s still a big part of my day. And Calgary hospitals had been unrelentingly unhelpful. Being a repeat patient for issues that continue to happen. I don’t know why but I’ve been told directly from psych teams, ‘people with BPD don’t belong in hospital.’ That ‘you need to go now, you have BPD, you’re gonna get way too attached.’ I’m like ‘listen it’s been two and a half weeks, and I can’t leave my home today. It’s so bad I cannot function,’ and being told ‘well this is how we’re gonna treat you,’ and it’s gotten to a point that seeking help in those times is very, very, scary.
I write a letter and I don’t tell them anything, until I’m at a place knowing that I’m going to spend 24 hours, up to 96 hours, in an ER where nurses actively work to devalue you. You know, I feel like ERs are not supportive of things they can’t see. And that’s something we’re going to fight like hell to change, cause it can’t keep happening.
Tiffany: What do you hold onto in those moments; what keeps you connected to that sense of humanity or the part of yourself that you named as ‘human’ that was screaming yes for connection? How do you hold onto that in contexts where you know that you’re going into a hostile but necessary space?
Sam: Ahhhh [big sigh]. The will to live. I feel that in many forms of the recovery moments, I need to hold on and go through these experiences because I know this is what I need to stay safe and that one day, just maybe, there can be enough ripple effect that I can be that change. That’s all I’ve ever wanted is to make impact in the world for the better.
Tiffany: I think just speaking from myself, because we have intersected and collaborated in many spaces over many years, I certainly have been impacted by your role in my life. And I think like obviously I’m not [gestures towards the audience], but I imagine this is a very moving thing for me to hear and I imagine it might be moving for folks out there, too, so I think that that impact is happening.
One common theme is that there’s this idea that BPD renders you incapable of making your own choices and decisions, that BPD kind of like, drives the bus. That’s part of that dominant discourse. And what I hear when you talk about being the change, or making a ripple, is a strong connection to a sense of agency.
So, I guess I’m curious, are there people in your life who know that you cherish that ability to make a change?
Sam: Yeah, absolutely. My mom is a huge person who tells me quite frequently, like, if you want something, like you’re gonna go for it. And there’s been lots of different places where people see that innate agency within me. And I don’t know how it developed, I think trauma probably, enough trauma, to say like, fuck this, this is not my story. Finding support anywhere I can, whether it is the person on the street who can relate in ways that the bureaucrat cannot. I don’t know, it’s everywhere, and it’s so little, but it’s tiny shifts, tiny, tiny shifts. And I think of course recognising I’m very privileged, and so I have very different intersections than more marginialised folks and I acknowledge that today.
Tiffany: That sort of ties into the next question that I had written. Difficulty in relationships is one of the most common traits associated with BPD and yet our BPD Superpowers group has maintained such a strong focus on community and the role of cherished friends and community members and family. That came up again, and again, and again in our conversations.
So Kay, I was wondering, who in your life has been supportive in helpful ways and what have they done that’s been helpful, how has that community shown up for you?
Kay: [laughs] This is like, I can talk about myself and that’s okay. My husband, like…it makes me cry every time…ahh [big sigh], so definitely my husband, my spouse Brandon. He was there every single turn, not sometimes embracing the more dark corners that I had, but still witnessing them, and knowing that I had that agency. And I had the strength and the passion and the compass inside of me; that I was the expert. He just was there in crucial moments where I felt like I was bubbling; he just stood there and was my witness and believed that I would figure it out.
And that spoke volumes, because there was a point, kind of like, my darkest hour, I had not a single friend. I didn’t even have one. But Brandon was there. And he let me do whatever I needed to do. He never gave me guilt trips, or shamed me for the way that my mental health was presenting itself. And always generally just told me, ‘you’ve got this. I trust you with your own life.’
And that meant everything. Just having one person in my corner. I was like, I don’t have family connections, I don’t have any close friendships because it did all burn down at a point, like, you know, I was a toxic individual in all of my communities and all of a sudden every single door I thought I had was closed. And he just stuck around. And like, stuck around enough that we now go to relationship therapy and identify ways that we can communicate better, and it betters my other connections that I now have, and I value him so much. He’s like the best part of life.
Tiffany: What really jumps out at me in what you shared there, was the way you phrased, ‘not necessarily embracing but witnessing every part of you.’ I was wondering, what does it look like, or what are the actions that can be associated with not embracing, but witnessing? How does that show up in your relationship?
Kay: Well, I mean, I have a really dire relationship with most substances. To the point where I’d be pretty much drunk all the time, and it was impacting me in ways that I had no idea. And this has gone on since I was 19 years old and reached a fever pitch about 3 years ago, so the last 3 years have been the drunkest of my life, and not in a fun way. And other substances got involved, but even then, even when I told Brandon what was going on, he was still like ‘okay, fine, I can’t change things for you, and like, this is how you’re coping right now. Please, please come to me if you feel like talking about this or you feel I can help you in some way.’
And so I knew that there was no shame associated with that coping mechanism, any of my coping mechanisms, like self-harm. He [would say], ‘okay, so you’re gonna go in the bathroom and you’re gonna cut.’ We had a conversation about it. ‘What are you doing right now about that?’ And I was like, ‘I am cutting to release all of the feelings’. And so he’s like, ‘so you’re not cutting to kill?’ And I was like, ‘I am not cutting to kill.’ And he said, ‘okay, well there are little bandages and sutures in there, there’s clean razors in there, there’s alcohol in there, and can I just sit on the other side of the door?’
And I said ‘yes, thank you.’ And closed the door and did what I had to do, and felt his support through a door while I was self-harming.
So, like at that point that’s what it looked like. And then with my alcoholism and substance abuse, he let me ride that to the point of almost pure and absolute self-destruction, but still with the absolute faith and lack of judgement that I would figure it out. And I did. And every single day, he’s like, ‘I’m so proud of you, I know how hard this is, and I know it’s every day.’
Tiffany: It’s interesting because that story really runs counter to a lot of dominant narratives around both substance use and self-harm, and actually around mental health too, and the idea of enabling as a thing that can happen, a negative thing. It sounds like part of what Brandon has offered is space for you to make the choices that you are going to make without judging you for them, and helping you make them in ways that allowed you stay as safe as possible within that. That’s really powerful. I wish I had a better response to that, but it just really jumped out at me how that story of what was helpful really stands against some of the discourses that we have, that say that in order to be helpful, people need to like, not allow, or control access to, or other things like that.
[to Sam] You shared about your mom who is really meaningful to you, and I was wondering if there have been other people in your life that have supported you in helpful ways, or what has been helpful. Or if anything resonated about what Kay shared.
Sam: Oh, man. It really brought me to an emotional place with that.
Kay: Me too.
Tiffany: Me too.
Sam: Yeah, I think that the word that comes out for me is harm reduction. The idea that if people don’t have safety in like, housing or food opportunities or like, love, basic needs, that they’re probably not going to magically get better. And I think that’s really valid.
I’ve had lots of different experiences with acceptance. My family’s pretty great at like, oh, what do you want today, it’s sobriety, great, like go give ‘er, or oh, you’re in a place of using, well, we support that, and it was really confusing for a long time, cause I’d use that as justification. I’m like, everyone thinks me using is a great idea, like, even my professional team was like, okay, you’re using. And I was like, waiting for the hammer to come down and like, it didn’t happen. But in doing that it really allowed me to want change for me.
I’m quick to think, ‘what do you need, what do you want, how can I be perfect like okay don’t show BPD, don’t do it.’ And so learning that agency piece again has been really big.
I have the privilege of having someone in my life where we’ve run through the gamut of aspects of enabling codependency and I definitely think that can be a part of any relationship right? It’s such a fine line for me. I was in a very codependent relationship and that is my pattern, just to feel safe. I don’t know now if that’s just my own internal stigma and pathologising, but learning that despite my challenges, there is someone who, no matter where I’m at, might need boundaries that I don’t always like, but will be there. Someone who just silently roots for me.
Sober spaces are a big, important aspect of my life today, and I find 12 Steps helpful. Not always, but I remember how many times I [would] go out and actively use or come back and want recovery, and somebody just simply says ‘hey, glad you’re here.’ Not ‘where the fuck were you, why aren’t you…’ just ‘hey, I’m glad you’re here.’
You know, my family has showed up in lots of ways, too. No one says, ‘you’re going to the hospital again?’ They’re like ‘Okay. Do you want visitors?’ So, there are really subtle ways.
My DBT therapist also has been very good. There’s aspects of the self-harm for sure, of like, ‘okay, we have self-harmed.’ Rather than, ‘you have self-harmed. Here is the punishment.’
And I think flexible boundaries, but boundaries, are really helpful for me, so that witnessing, what Kay said, rather than controlling or enabling, is so subtle. I don’t know if I have it figured out quite yet, but seeing that I can also do that with others, cause I’m quick to enable. ‘Oh, I need you to love me, I need you, okay whatever you do, that’s great,’ like…and I’m learning through examples, that there is a space where I can witness and hold space without controlling.
Tiffany: One thing that really jumped out at me as we were talking was the idea that it allowed you to choose to change for yourself, and I’m curious how you have figured out, or what has helped you connect with the ways that you want to change? How do you figure out where you want to go?
Sam: Yeah. Meditation is a big cornerstone, so I really have to work at understanding what’s in my body, what’s in my deepest sense of self, and quieting down the stimulus that happens outside. So taking that time to really like, do bodywork and sit in emotion. For me here up [motions indicating from the neck up] my body has often been a war zone. It’s not safe, it doesn’t feel good, I don’t want to be in it, and just that slow, steady, somatic invitation, and then like, journaling, writing, like, trial and error, you know? I have unrelenting standards, and so just process and recognising…giving myself permission to be utterly, completely messy. Cause that’s human to me.
Tiffany: Mhmm. I wanna go off my script here, because I’m really curious about the idea of boundaries, and how boundaries can be set in a way that doesn’t feel controlling, but does feel… ‘good’ is such a silly word, but it’s the only word that’s coming.
So, I guess what I’m wondering is, what does it look like when someone sets a boundary that, like you said, might not feel good for you, but is a necessary part of that relationship? Are there specific actions or ways of talking about that or enacting that boundary, that are helpful or that invite you to be a part of that process, or that make it possible for you?
Sam: Yeah, I’m super sensitive to perceived rejection, absolutely. Where I really have struggled…the word ‘good’… my language shift is ‘effective’.
Where it’s really effective for me is when someone invites me. Not into the decision, but the process of the boundaries. So [something] has been violated, boundaries are very contextual things, and if something has crossed said boundary, if they invite me in and say ‘hey, you know when you called me 16 times yesterday? That crossed my boundary.’
There’s an action, there’s something that they’ve admitted that they need, there’s a vulnerability piece, and then it’s like, ‘I realise that you need support, I cannot be that support on that level. What do you think you or we could do to help you through that?’ So just issue, consequence, and follow-through as well. I like consistency a whole lot, because it helps me feel safe. So, if this continues to happen, the consequence will be I will have to set even further boundaries with you.
And that role modelling really, really invites me to know and trust that if and when I cross people’s boundaries, I know that they have enough respect and love for me that they’re gonna actually come back to me and be like, ‘okay, this has happened,’ versus like ‘you’re BPD, you’re messed up, bye!’ and that tends to be how things go.
Tiffany: It’s interesting. It makes me think of both the narrative therapy foundational principle that the person is not the problem, the problem is the problem, and the solution is not individual. And it also makes me think of Rebecca Lester saying that BPD is attenuated through relationship; that you can co-create a space that makes it possible for that to just be part of the context you’re creating together.
[To Kay] I heard you going ‘Mmm’ a few times, and I wanted to ask, what do you think about this boundary conversation? Are there ways that boundaries have shown up in your relationships that have been effective.
Kay: Well, it’s funny because like I said, I really rejected a lot of the ways that people describe BPD. So, I was like, ‘I don’t take rejection hard, I just like being considered.’
So, when you said, ‘being a part of the process of boundary setting,’ [that] is consideration, it’s valuing someone enough to involve them in the conversation about what’s going on, rather than just cancelling them outright, which can explode everything. And, I mean…[laughs] there’s…I don’t know, it’s a really confusing situation for everyone to be in, because everybody has the right to have a safe relationship, and to know their own needs and their own desires, but I feel like we also have a responsibility to each other in our intimate friendships and relationships where it’s like, ‘no you can’t just cancel me.’ Like, my heart is broken, and I still don’t know [why].
So when somebody does set that boundary, and has me be a part of the conversation, I’m yours for life. There’s trust there, instead of just confusion and pain. And that’s my number one trigger in pretty much every situation, I can trace it back to somebody not asking me how I felt or where I was at. It’s like, ‘why aren’t you considering me in this?’ And why am I not valid in this context, as a part of it, and integral part. So, yeah. [laughs]
Sam: That really spoke to me on those boundaries. Thank you.
Tiffany: It’s interesting because that idea of being invited into the process, not necessarily, I don’t think I’m hearing from either of you that being invited into the process means being in control of it or having any kind of veto power over people’s boundaries, but having the courtesy of being told what the boundaries are, that sounds really important. And there are narratives about BPD as being controlling or manipulative and unreliable and untrustworthy, and in this conversation about boundaries, it sounds like maybe some of those descriptors might not encompass the whole humanity of the people that are being described.
So the last question that I planned for us today has to do specifically with the superpowers that we’ve identified in group conversations. I was wondering, Kay, if you could speak about which of these superpowers you have a particularly close relationship with, and what that looks like for you?
The BPD superpowers that we identified were:
The superpower of community and community care
The superpower of showing up
The superpower of resilience
The superpower of endurance
Dialectics as a superpower, meaning holding multiple true stories at once
Superpowers of empathy and compassion
The superpower of quick turnaround of emotions
The superpower of being able to get out of a bad situation
And the superpower of chameleoning and flagging. Chameleoning being the ability to blend into situations, and flagging being the ability to signal to other people parts of their identity.
Kay: Good, okay. Well, probably 75% of that list.
The things that jump out at me personally that I know I am ‘super’ at are chameleoning. It’s interesting because it is so often framed as manipulative behaviour. And oftentimes it is also thrown in with a bunch of other personality disorders I was slapped with. It’s like, ‘you’re doing this to impress people, you’re doing this to like, whatever, survive,’ and it was [framed as] a negative coping mechanism. But it’s actually a superpower, so I definitely feel that.
And that also feeds my resistance and my resilience, and I feel like we’re really good at holding on and believing that there is better and more and I definitely feel… I guess community wasn’t really one that stuck out at me, that’s not really my strong suit, but chameleoning and empathy are probably my number one.
It’s like, feeling those strong feelings.
Someone said the word trauma bonding to me the other day and I was like ‘that sounds like a negative thing like in the way that you said it with your voice and the inflection; I don’t think I like it.’ And she had to stop and be like, ‘well you know honestly, it usually is perceived to be a really bad thing, like, you’re just using your trauma to bond,’ and I was like ‘oh, but that’s what we do [laughs] and that’s how things happen and like, it happens to someone else.’ And she’s like ‘okay well maybe it’s codependent,’ so she threw a bunch of unhelpful stuff at me and I was just like ‘fuck this I’m taking back trauma bonding.’
I mean, my empathy helps me connect to people that have been in difficult situations and I’ve been like that since I was a child. And I always thought that there was something wrong with me that I could feel these things with such overwhelming reality, like sometimes it would displace my own self and it would just be me in a sea of so much human difficulty. And I would see it and I would be so overwhelmed I would shut myself off and not know what to do. I’d be frozen because my powers of empathy I had not yet learned to control. [laughs] or like, work with, I guess. So that’s where empathy is definitely the one that I really feel. All the time.
Tiffany: I have read quite a bit about trauma bonding and you’re right, it is often framed as a negative thing. And I can see how there are situations where it can introduce problems to a relationship or to people’s lives.
But like, we never talk about ‘boardgame bonding’ in the same stigmatizing terms even though any kind of relationship based entirely on shared experience can hold space for unpleasant parts of that relationship or unpreferred parts of that relationship.
[to Sam] I’m gonna ask you the same thing.
Sam: I think for me a big aspect that really resonates is just like the ability to sense people, sense emotion, and show up and care, cause I know my needs and wants around human connection are less than surface, it’s fairly deep-rooted.
And so I look for opportunities to show up for others in those ways. And in a lot of feedback that I’ve received from family and friends [they’ve said] ‘wow, you’re so genuine and caring, like I just feel so loved. You’re so thoughtful and I appreciate that’
And what Kay said is that that’s often pathologised as a ‘dependent personality’ or ‘histrionic’ or like, ‘fuck off’ [laughs] you know, like, when is being genuine a great thing and I think this superpower discussion completely hits that on the head.
I can sense, I feel like a canary in the mine quite often. Things are just starting to get like ‘oooh this is dangerous.’ I can empathise and show up and just say, ‘you know, I’m feeling stressed about that, how ‘bout you?’
I think flagging, it’s definitely a big thing. Like I flag mental illness fairly frequently, and while it’s a very tricky thing to do, and has much consequences, I think those consequences do not outweigh the benefit of just saying ‘I have mental illness’ cause that conversation is huge.
You know, I used to work in health care, and it was delicate, coming out with mental illness, or having anything that made you possibly susceptible. And I refuse to hold it in anymore. Welcome, you’re welcome. I am not an island, you are not an island. Here we are, many of us. So, that’s a big thing I try and do.
I also think that the ability to chameleon is huge.
My resilience is probably one of my strongest traits, like, you give me something that I should not have or maybe not good to survive and I will. Why? Because that’s all I know. There’s no choice not to. It’s simply this is awful thing is hard, you know. Whether it’s been medical experiences I have gone through the ringer. I don’t know how, I don’t know how I did it. And I did.
So, I think people who survive or live with marginalisation or challenges and are slapped with this diagnosis actually are far more versatile, you know? BPD is like ‘oh they can’t do this and they’ll struggle’ well fuck yeah, they will, AND where’s the part that they get through it? Where’s that part of it? So this superpower concept like, has often given more grace than three and half years of consistent therapy ever did.
Tiffany: One of the things that was identified in our conversations was the idea that folks with BPD, for a variety of reasons, often have very well-developed skills for navigating complex persistent traumatic experiences. And right now, there are a whole lot of people in the world looking at climate crisis, and rising facism and late-stage capitalism, and experiencing persistent traumatic feelings.
So I think it would actually be very interesting if we could figure out a way, and that’s one of the goals of the resource, to take some of these skills that have been developed by folks with BPD diagnoses and teach other parts of the community how to navigate big, intense, persistent negative feelings.
Because I look at my facebook page, and I think there are a lot of folks who have not really been confronted with big, persistent, negative feelings that get really overwhelming, and there are skills within, there are insider knowledge within, folks who have BPD that would be helpful for a lot of people who right now might not ever have had to navigate that experience.
The last thing I wanted to ask was whether there’s anything that either of you really wanted to talk about that I missed in my questions, or that has come up in our conversation that you wanted to circle back to, or just open up a little bit of space for either of you.
Kay: I’m good. I also love that we’re kind of wrapping it up with the future in mind because I feel like so often I feel like a lot of us don’t have… we feel like we don’t have a settling spot, we don’t have a place to feel safe, we literally don’t. Like there are very few places we can go where we know deep in our souls we’re safe.
So, like, we have our online communities, we have small discussion groups, but like, giving me even the suggestion of somebody else valuing my perspective and lived experience makes me feel good. So, I love that we ended it with that, because it’s like yeah, we are absolutely assets to society. We do deserve to be in hospital. We do deserve to tell our stories and be valued members of society, so, and I’m looking forward to that because like… I’ll never forget, my boss sat me down and was like, ‘yah, like honestly? The way you’ve been acting, like there’s no excuse for it. Everybody has things that go wrong,’ and I looked at her and I was like ‘call me when your mom dies, cause I’ll be ready.’ I still feel that way, I’m like call me, because I’ll know how to navigate that pain with you and witness you with kindness and empathy. And that kinda goes with everybody that’s gonna slowly realise that all of this shit is gonna come back to every one of us. So, we’re here and we can help! [laughs] firefighters! [laughs]
Tiffany: [to Sam]: Was there anything that you wanted to talk about that we didn’t get to or that you wanted to come back to?
Sam: I think the biggest thing that is so important, is anyone who tells you ‘you’re too sensitive’ or ‘you’re not blank…’ is just like, fuck them, number one!
Number two, I think it was really mentioned in here is challenging the bias that exists in others. Because when someone is deeply uncomfortable with who I am, it has nothing to do with me. Because it’s their own process where they are uncomfortable. They often don’t recognise their own emotional needs, and it is a deeper reflection of maybe their own stuff. And so my whole life has been ‘too much’ for others, and I’m learning, that’s theirs! I am just okay today so I just want to thank people for holding space. I just wanna like, squeeze you but I won’t, but like, thank you. Like Kay said, I’m glad that we’re focussing on the future. That’s wonderful.
Note from Tiffany: If you wanted to offer any witnessing to Kay and Sam, please email me and I will pass it along.