The first Existential Dread Club conversations happened in July, 2021. Things were bad, then, too.
In those conversations we talked about what was contributing to our experiences of existential dread.
Here’s some of what we said in our first meeting conversation;
I don’t know if existential dread is quite the right word for it, but like, a feeling of hopelessness and overwhelm and uncertainty about the future, because it seems like every time we do something to make some kind of progress – like we have the Truth and Reconciliation Commission and they generate this phenomenal body of work. We have the Missing and Murdered Indigenous Women, Girls, and 2 Spirit final report and they generate this incredible body of work. And within that body of work, there is so much education, so much emotional labour of Indigenous communities, and then it does nothing! The government does nothing with it and that contributes to my feeling of like, “Why? And how? And what even is the future?”
We went through that historic heatwave just, you know, 10 days ago. And that left me feeling more intensified feelings. I’ve been thinking about what kind of world we’re leaving for the people who come after us, and what we have done to this planet.
I think capitalism and how to actually deal with capitalism so that we can do something about all of these different things. Because there’s not really any incentive under capitalism to stop making money quarterly.
I see a lot of initial momentum towards maybe challenging capitalism, but I fear that this is just people online, on social media saying ‘yes, this sucks,’ but thinking that there’s no actionable things attached to challenging it in any way. And so I fear that it’s this moment where it’s possible but probably not gonna happen. And that’s really tough.
Definitely the general feeling of, like, hopelessness that’s reflected back to me when I chat with folks… it’s a lot.
We talked about friendship and trust and hope, and the effect of feeling hopeless and despairing and lonely. And we talked about what helps.
We talked about not being able to control other people, and how that makes things hard – how the actions we see people taking that cause harm can invite us to feel both responsible and hopeless, and how turning our energies towards the relationships where we can make a difference feels more possible, more hopeful, more generative. In those spaces of relationship, where trust has been developed and care exists, it’s not about control, it’s about influence and connection.
One participant said, “The smallest things we can do are the things that just help us personally, that we can only do for ourselves not to feel so much dread. And then as you get bigger it’s about trying to affect maybe your friends and family. And then it gets to trying to affect society and that’s where it gets bigger and bigger, but it also gets harder and harder.”
A Weekend at the Existential Dread Club is my attempt to widen my circle of influence just a little bit, for just a little while.
I haven’t been doing much organizing lately. I have mostly been hanging on by my fingernails to this life. Doing what feels possible, acknowledging that what feels possible is most often the smallest, most personal thing.
But I feel an intense amount of dread these days.
Things are bad.
Things are so bad, in so many areas.
Issues around the pandemic, and how we are watching ‘the easing of protections’ (to use a phrase from a dear friend) sparked the idea for this second Existential Dread Club event. There is growing existential dread for those of us who are disabled, chronically ill, medically complex, or otherwise at increased medical risk (due to personal factors, sure, but also due to structural factors like medical racism, transphobia, fatphobia).
But between having the idea and actually organizing anything, so much more has happened. War in Ukraine. Floods in Australia. Cost of living shooting up fast enough that people I know and love can’t pay their bills. Texas coming after trans kids and anyone who tries to offer trans affirming care. The ‘convoy’. Anti-mask demonstrations every week.
Everything present in those first conversations, escalating. Colonialism. White supremacy. Climate change. Capitalism.
And alongside all of this, I really miss organizing. I miss facilitating events. I miss conferences and retreats. I miss community spaces and the conversations in those spaces and the documents that grow out of those spaces. I miss being the past version of me who had energy for that kind of work, time for that kind of work, space for it.
So, this is a virtual retreat. A weekend to talk about what we’re afraid of, what we’re holding onto, how we’re getting through.
There will be three facilitated conversations:
Friday, April 1 from 6:30-8 pm MST
Saturday, April 2 from 1:30-3 pm MST
Sunday, April 3 from 10-11:30 am MST
There will also be a gather.town set up for the weekend, where we can chat, post messages, maybe have a watch party together on Saturday evening. I’m hoping to capture a little bit of the casual conversation and social connection that I miss so much from facilitating retreats.
There will probably be a writing workshop, too.
You can join for whatever part of the events feels best for you and fits into your schedule. You can register here. There’s no cost, but there’s an option to donate if you want to.
For now, only the three facilitated conversations are formally scheduled, but as we get closer to the weekend, other events will be scheduled.
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:
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
The following is a slightly modified version of the text of a presentation given on August 24, 2019. The second part of this event was an interview with Kay and Sam, which will be shared next week. Both of these posts are shared in celebration of BPD Awareness Month. The image is a still from the presentation., with Kay on the left, Tiffany in the middle, and Sam on the right.
Welcome to “Recognizing BPD Superpowers”, on the topic of sharing and celebrating the hopes, skills, insider knowledges, and experiences of folks who identify with Borderline Personality Disorder, or BPD. This includes people who have claimed the label for themselves, people who have had the label applied to them, and people for whom both are true.
I want to note up front that this presentation will include references to self-harm, suicidality, and to some of the stigmatizing and pathologizing language that is often applied to folks who are identified with BPD. This has the potential to be triggering. If, at any point, you need to take a break – that is a-okay! Also, it’s a long post! Sorry!
Before we get started, I’d like to introduce you to my co-facilitators.
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.
Both of these humans have been phenomenal supports and collaborators, and I’m honoured to have shared this space with them. The narrative interview with these two lovely humans, which followed this presentation, will be shared next week on this blog.
My name is Tiffany Sostar. My pronouns are they/them. I’m a narrative therapist, community organizer, editor, writer, workshop facilitator, and tarot reader – I do a bunch of different things, and they all sort of orient around engaging with stories. The stories people tell about ourselves and others, the stories we’ve been told about ourselves and others, and, especially, how we can tell our stories in ways that make us stronger. That phrase – telling our stories in ways that make us stronger – comes from Auntie Barbara Wingard, an Australian Aboriginal narrative therapist who has done profoundly meaningful work on many topics, including creating ways for Indigenous communities to grieve together in ways that are consistent with their cultures.
My own work is significantly influenced by the work of Indigenous narrative therapists and community organizers, including Auntie Barb, Tileah Drahm-Butler who is another Australian narrative therapist, and Michelle Robinson, who is a community organizer and politician here in Calgary. (You can find one of Aunty Barb’s projects, a walking history tour here, and one of Tileah’s project, a presentation on decolonizing identity stories here, and Michelle Robinson’s Patreon and podcast here.)
Colonial Violence and BPD
As a white settler who works in the field of mental health, a field that has historically been incredibly harmful to marginalized communities, including Indigenous, Black, trans, queer, two-spirit, fat, unhoused, sex working, substance using, and so many other communities who have come to professionals for help and been met with stigma and harm, I think that recognizing how much I have benefitted from the work of marginalized communities is critical. Any good work that I do in communities that are more or differently marginalized than I am myself is entirely due to the generosity and wisdom of the people within those communities who have shared their insider knowledges.
This workshop happened on Indigenous land, and this blog post is being written on Indigenous land. All land is Indigenous land. Here, I am on Treaty 7 land. It is the land of the Blackfoot Confederacy, including the Kainai, Siksika, and Piikani First Nations, and the Stoney Nakoda, including the Chiniki, Bearspaw, and Wesley First Nations, the Tsuut’ina, the Metis Nation of Alberta, Region 3, and all of the other Indigenous men, women, and two-spirit folks who are here as a result of child removals, forced relocations, economic pressures, or other reasons.
This work was inspired by Osden Nault, and we had been talking about getting this project underway for quite some time. We both noted the lack of BPD voices in resources and writing about BPD, and wanted to do something to address that. This presentation, and the resources that are currently under development, would not have happened without Osden. They also co-facilitated the first group discussion that created the foundation for this workshop. Osden is an artist of Michif and mixed European descent, whose art practice and research are both grounded in queer, feminist, and Indigenous world-views. Osden lives in Tkaronto on the traditional territory of the Haudenosaunee, Wendat, and Mississaugas of the Credit First Nations, under the Dish with One Spoon Wampum Belt Covenant, which precedes colonial treaties on this land. Even though they weren’t at this workshop, their influence was present!
This presentation was, and is, part of a larger series of resources that the BPD Superpowers group is creating around BPD, some of which will be shared during BPD Awareness Month in May of 2020. If you live in a colonial country and don’t know whose land you’re on, it would be worth looking that up. The land you’re on is now part of this project, too.
Here in Canada, the Final Report on Missing and Murdered Indigenous Women, Girls, and 2SLGBTQQIA people found that:
“The significant, persistent, and deliberate pattern of systemic racial and gendered human rights and Indigenous rights violations and abuses – perpetuated historically and maintained today by the Canadian state, designed to displace Indigenous Peoples from their land, social structures, and governance and to eradicate their existence as Nations, communities, families, and individuals – is the cause of the disappearances, murders, and violence experienced by Indigenous women, girls, and 2SLGBTQQIA people, and is genocide. This colonialism, discrimination, and genocide explains the high rates of violence against Indigenous women, girls, and 2SLGBTQQIA people.”
We must talk about colonial violence when we are talking about trauma-related mental health experiences, which many people experience BPD as being, because otherwise we risk perpetuating harm. For example, the 2014 research paper “Characteristics of borderline personality disorder in a community sample,” published in the Journal of Personality Disorders, finds that Native American and African American communities are significantly more likely to be diagnosed with BPD, and with other conditions such as depression, anxiety, etc.
I think that, knowing this, we must look at racial trauma, and acknowledge how racial trauma impacts individuals if we are going to talk about these experiences and diagnoses. Otherwise, we are missing key context.
Rebecca Lester, in her paper, “Lessons from the Borderline” writes:
“Most people diagnosed with BPD grew up in situations where their very existence as a person with independent thoughts and feelings was invalidated (Minzenberg et al., 2003). Sometimes, this entailed chronic abuse, either physical or sexual. Sometimes it was more of a grinding parental indifference. People diagnosed with BPD overwhelmingly experienced their early lives as involving constant messages that they do not – and should not – fully exist.”
How can we separate this from the findings of the Final Report, which identify exactly this dynamic of abuse and identity invalidation as having been directed at Indigenous communities since the beginning of colonization? I don’t think that we can.
What even is a “personality disorder”?!
So, borderline personality disorder, like many “personality disorders” is a contested and controversial term and diagnosis. Heads up for some stigmatizing and pathologizing language in this next section. I want to give you a bit of context for the social location of BPD, and for my own positioning here.
I have never received a diagnosis of borderline personality disorder. Although there are many BPD characteristics that I do strongly identify with, and I share an experience of trauma that many BPD folks might recognize, I do not feel a strong attachment to the BPD label. In my own life, I am comfortable recognizing certain shared experiences without claiming a shared identity.
In my own work, I do not diagnose the community members who consult with me for narrative therapy, but I do respect and work with the diagnoses that people bring into our sessions. There are lots of reasons for this, but one important one for locating myself within this work is that as a narrative therapist, I am interested in externalizing problems – meaning, locating the problem outside of the person I am consulting with. I think that many contemporary ways of speaking about borderline personality disorder invite us to view BPD as a set of traits inherent to an individual.
BPD is often described as a volatility that can make people dangerous, an instability, a lack of cohesive identity – all of these ways of speaking about BPD locate it within the person, rather than within their context. I think that this obscures the many ways in which folks who have been identified with BPD respond to the problems in their lives. These ways of speaking, of telling a story about BPD, can end up having the consequence of giving BPD more agency than the person in front of us!
And I think that this is a problem.
I also think it’s a problem that can arise even when we’re not being malicious or trying to be stigmatizing – “You can’t help it, it’s the BPD” is a framing that invites neither accountability nor dignity and agency, even though it appears to be a compassionate approach.
Instead, I am interested in how people respond when BPD shows up in their lives. I’m interested in learning when this problem first showed up, what it wants, and how people have responded to it. What are they valuing when they pick up a DBT workbook and start developing their strategies for emotional regulation? What are they hoping for when they continue to show up in relationships despite the BPD voice telling them to bail? Who taught them that they could respond? Who in their lives knows what they cherish, and would not be surprised to learn that they are taking actions to respond to the problems in their lives?
Rebecca Lester writes:
“I understand BPD somewhat differently than my clinical colleagues who see it as a dysfunction of personality and my academic colleagues who see it as a mechanism of social regulation. In my view, BPD does not reside within the individual person; a person stranded alone on a desert island cannot have BPD. Nor does it reside within diagnostic taxa; if we eliminated BPD from the DSM, people would still struggle with the cluster of issues captured in the diagnosis. Rather, BPD resides – and only resides – in relationship. BPD is a disorder of relationship, not of personality. And it is only a ‘disorder’ because it extends an entirely adaptive skill set into contexts where those skills are less adaptive and may cause a great deal of difficulty. Yet due to the contexts in which the skills were developed, the person has a great deal of trouble amending them (Linehan, 1993). Since BPD resides in relationship, BPD can also be attenuated through relationship: it is not a life-sentence, and it is not even necessarily problematic if managed constructively.”
One of the foundational beliefs of narrative therapy is that the person is not the problem, the problem is the problem, and the solution is rarely individual. I think that this is an important framing to bring to discussions of BPD.
So that’s where I stand.
Questioning the Discourse
How about the discourse around BPD?
In her fantasy book Borderline, author Mishell Baker, who identifies as BPD herself and has written a badass BPD heroine for the novel, writes, “Sometimes, the first thing people learn about borderlines is that you can’t trust them. And there’s not always much learning after that.”
That’s why it is so important to think critically about the stories we are telling about BPD, and about people who are identified with BPD. To keep learning. To interrogate what we have been taught or told about what it means to live with BPD experiences.
Does the story leave room for the dignity and agency of the person being described?
Does it position the person as the expert in their own experience?
Who does this story serve, and what are the potential outcomes of this story?
We need to ask these questions anytime we read an article, a post, a book, a webpage – what, and who, is being supported in this narrative?
What, and who, is being diminished?
Bring these questions with you anytime you engage with writing or speaking about BPD (or anything else!)
BPD is recognized as one of ten personality disorders in the DSM, The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. In the ICD-10, the manual used by the World Health Organization, this diagnosis is named “emotionally unstable personality disorder.”
The Mayo Clinic defines a personality disorder as:
“A type of mental disorder in which you have a rigid and unhealthy pattern of thinking, functioning and behaving. A person with a personality disorder has trouble perceiving and relating to situations and people. This causes significant problems and limitations in relationships, social activities, work and school.”
We’re going to come back to this idea of “trouble perceiving and relating to situations and people” because, in fact, many participants in our BPD Superpowers group identified themselves as being uniquely and specifically skilled in observing their environments, relationships, and selves, and in building community and empathizing and connecting with other people. Although it is true that many folks experience BPD as getting in the way of their relationships at times, this does not mean that they cannot perceive and understand what is happening around them.
BPD and Abuse
This framing, this story of what a personality disorder is, can be weaponized against a person who is identified with BPD. It can actually leave them more vulnerable to abuse, because it frames them as being somehow inherently and perpetually incapable of accurate perception. Even if this is not what a clinician might mean when they use this language, this is what you get from a quick google search. Very little discussion of the social contexts within which these so-called “personality disorders” arise, and almost nothing that describes the skillful and intentional ways in which people respond to these problems.
Gaslighting refers to actions that cause someone to question their own memory, perception, or sanity. Gaslighting can happen intentionally – lying about, denying, or misrepresenting what has happened.
But it can also happen unintentionally when we treat someone’s perception as unreliable, when we default to the idea that they are lying or mistaken, when we refuse to position them as the experts in their own experiences. The discourse of personality disorders as meaning that a person “has trouble perceiving situations” can create a context within which a person with BPD is being constantly, and often unintentionally and non-maliciously but still harmfully!, gaslit. It can leave people who are identified with BPD in the position of not being believed if they are subjected to abuse. It is not a helpful framing.
How are we witnessing BPD?
As an alternative framing, it might be helpful to ask ourselves what is influencing how we are witnessing the people in our lives who are identified with BPD. Are we kind witnesses to their experiences? Are we holding space for them to share their insider knowledges into what they need, what they are experiencing, and what is helpful for them?
And on the topic of helpful or unhelpful, here is what Wikipedia has to say about BPD:
“BPD is characterized by the following signs and symptoms:
Markedly disturbed sense of identity
Frantic efforts to avoid real or imagined abandonment and extreme reactions
Splitting (“black-and-white” thinking)
Impulsivity and impulsive or dangerous behaviors (e.g., spending, sex, substance abuse, reckless driving, binge eating)
Intense or uncontrollable emotional reactions that often seem disproportionate to the event or situation
Unstable and chaotic interpersonal relationships
Frequently accompanied by depression, anxiety, anger, substance abuse, or rage
The most distinguishing symptoms of BPD are marked sensitivity to rejection or criticism, and intense fear of possible abandonment. Overall, the features of BPD include unusually intense sensitivity in relationships with others, difficulty regulating emotions, and impulsivity. Other symptoms may include feeling unsure of one’s personal identity, morals, and values; having paranoid thoughts when feeling stressed; depersonalization; and, in moderate to severe cases, stress-induced breaks with reality or psychotic episodes.”
The wiki page also includes the Millon subtypes, which include Discouraged borderline, Petulant borderline, Impulsive borderline, and Self-destructive borderline. Fabulous.
So that’s Wikipedia, which is one of the first places that many folks look when they receive a diagnosis of BPD or when they are trusted with a disclosure from a friend or family member, or when they hear about someone having BPD.
If you are here as a friend, family member, or someone in community with folks who are identified with BPD, imagine what it might feel like to read that about yourself, and to have that be the dominant narrative of who you are. Imagine what it might feel like to know that people around you are reading this about you, and may be talking about you and people like you in these terms.
If you are here as a person who identifies with BPD, know that I and every one of the people involved in this project, and many people beyond this group, see you for more than these degrading and diminishing descriptors. We recognize your superpowers. We recognize your resilience. In one of the group discussions, a participant said, “Every single person with BPD who is still with us, and those that aren’t still with us, I think that we absolutely deserve to be acknowledged and that our hard work should be acknowledged. Not tokenized or pedestalized, but having that work acknowledged and witnessed.”
And I agree with Rebecca Lester when she writes:
Through challenging embedded bias, honoring the testimonies of individuals, questioning of our own motivations, and renewing a commitment to reduce injustice, silencing, and suffering, our intellectual, clinical, and human potentialities are being stretched and, if we are fortunate, will continue to grow.
What I find most compelling about my clients with ‘borderline’ symptoms is that they are still struggling to exist despite the deep conviction that they do not deserve to do so. And they are still struggling to connect with others, despite being told again and again that they are manipulative and controlling and difficult. Far from being inauthentic, then, these individuals are reaching out into the world in the most honest, direct, vulnerable ways they possibly can, all the while bracing for the invalidation and hostility that they know is likely to follow. They cannot help but reach for connection, and to hold out faith, however dim, that they will find it. I find this incredibly inspiring; it puts front-and-center the impulse for growth and health that I believe exists in all of us, no matter how encrusted with despair, dysfunction, hopelessness, or defeat.
I learn from these clients every single day. Their struggles and their resilience humble me. They remind me that intellectual critique is but one piece of a much larger puzzle, and that they have experiences that deserve to be heard and validated, even when (perhaps especially when) they challenge our interpretations. They push me to become a better scholar, a better clinician, and, I hope, in the end, a better human being.
One of the contributors to the BPD Superpowers project, Dottie Ayala, shared the following on her facebook page and has given us permission to use this quote in the resource.
with my bpd symptoms, I just can’t handle cbt or dbt thanks to fucked up experiences in the past. And I don’t trust any therapists bc they’re only getting my POV about what’s happening and I think they side with me more than is valid sometimes. And also trusting someone else’s judgement more than my own is so damaging as an abuse survivor.
but I notice my reactions getting less and less severe over the years and that’s just like a combination of introspection, community, and also others holding me accountable. Plus realizing I have bpd helped me be able to recognize when I’m having a flare and prepare accordingly.
basically, mental health care can look really different for different ppl. I feel like my doctors act like I’m resisting treatment when really I’m just resisting being harmed more.
Dottie Ayala, Facebook post
Difficulty in relationships is one of the most common traits associated with BPD, and yet our group has maintained such a strong focus on community and the role of cherished friends and community members. This group, and so many folks identified with BPD beyond this group, prove how thin and simplistic are the dominant narratives of BPD.
I’m going to end with the list of superpowers that were identified in our group conversations. These superpowers will be explored more fully in the collective document, which I hope to have ready to share by the end of this month!
The Superpower of Community (and community care)
The Superpower of Showing Up
Dialectics as a Superpower (holding multiple true stories)
Empathy and Compassion
The Superpower of Quick Turnaround of Emotions
The Superpower of Being Able to Get Out of a Bad Situation
The Ability to ‘Chameleon’
Check back next week for the next BPD Awareness Month post, which will be the video and transcript of the interview with Kay and Sam.
After writing an update to my patreon supporters yesterday, wondering whether we could do some kind of small collective document or zine, I decided that, yes, I do want to do a little zine about how we are handling covid19.
I haven’t made a zine in a little while, and this is a pretty big issue that has lots of us worried and in our feelings. In my experience, writing and co-creating something can help us alchemize those big and overwhelming feelings into something that feels possible, into paths forward.
I love the comic about how we are basically houseplants with complicated feelings, and it got me thinking about how isolation means we need to be succulents, able to survive and thrive in conditions of scarcity and intensity, and how fear also turns out lives into deserts, and how precarity does the same.
So I thought we could use that metaphor, and make a little zine about what gets us through, and how we get each other through.
What are our skills of survival?
What are our strategies of mutual aid and collective action and care?
How are we keeping ourselves going, and what can we teach each other?
Many of us are in communities with generations-long histories of succulent lives in deserts of ableism, transantagonism, queerphobia, colonialism, white supremacy. Oppressed and targeted communities know the way forward.
If you’d like to write something about how you’re feeling about the news, the health guidelines, the government response, your own experiences of isolation as a result of disability or illness that were not accommodated and how this has given you insider insight into what gets you through… let me know!
I won’t be hosting an in-person narrative conversation about this (because social distancing is what we’re supposed to do!) but I was thinking that maybe we could host an online narrative chat about it, and turn that into part of this collective document.
Let me know if you would be interested in that, too.
Send your submissions to firstname.lastname@example.org. Please send your submissions by April 10, 2020.
This new project, which will become a zine or a collective document of some sort, is inspired by a community member who wanted to create a “map” of all the women and non-binary folks who have managed to live a life they want despite not having family support, and despite dealing with the fear and uncertainty that can come with acute illness and chronic pain.
This project reflects our collaborative desire to make this “map” possible – to bring together stories that will show some of the many ways forward through the compounded hardships of unsupportive family and what we might call “body problems” – illness and pain, but also the problems that can be invited into someone’s life by having a body that is deemed unacceptable in our ableist, fatphobic, transantagonistic, white supremacist culture.
We are looking at these factors together because there is often an expectation of family support in many of our cultures. When we fall on hard times, we are often advised turn to family. When we get sick, family is often expected to be there for us. Although we recognize that family is not always there, there’s still this dominant narrative that they will be, or at least that they should be. And when they aren’t, it can leave us feeling isolated, vulnerable, questioning our own value and our place in the world. Experiences of rejection, dismissal, or an absence of support can stay with us for a long time.
We are looking for stories from trans and cis women, non-binary folks, intersex folks, and trans men who have experienced an unsupportive family of origin paired with body problems, and who have continued to live a badass life despite these compounding factors.
(Although cis men also experience these compounding factors, and their experiences are valid and worth listening to, in this project we are also interested in the particular ways in which misogyny and sexism, which are experienced by anyone who is not a cis man, intersect with these experiences. If you are a cis man and want to share your story of experiencing these compounding hardships of unsupportive family and body problems, please reach out to me – I am happy to create a supplementary zine, or a section within this project! But the initial project is focused on non-men because this is an important part of the original context.)
These stories will be collected and turned into a small zine or collective document, and we hope that this resource will offer some hope for folks in this position, including the community member who inspired this project!
When we then also experience body problems, particularly body problems that impact our ability to find employment, to engage in cherished hobbies or activities, or to access social spaces and support, the lack of family support can become even more difficult to deal with. This is particularly true in contexts where the social support net is being eroded – where welfare, assisted living, disability pensions, income support, housing support, and other supports are difficult to access or not adequate to support our lives.
And yet, we know that people get through these hardships.
We know that there are disabled folks with no family support who are living rich and precious lives.
We know that there are so many people who have experienced these hardships and gone on to be successful on their own terms.
We want to collect those stories.
We want to pull those threads of hope together, and weave a safety net of stories for people who don’t yet see the way through to a life that feels possible.
You are welcome to write whatever feels right for you, and we welcome poetry, essays, art, creative non-fiction, or whatever format works for you. The length of the piece can be flexible, but ideally not more than 750-ish words.
If you would like help with the writing, get in touch with me and we can arrange an interview and I can help write up your story.
We hope to make this project available in early 2020, so please send in your contributions by mid-December.
If you would like some prompts to guide your writing, consider:
What does your culture tell you about how families should treat each other?
What had you hoped to receive in terms of support from your family?
What do you think that families should offer to each other?
What does this say about what you value in family relationships? (Care, support, being there for each other, etc.)
How did you learn to value this, and how have you held onto this value despite hard times?
Is there anyone in your life, past or present, who knows that you value this kind of supportive relationship?
Have you been able to find this kind of support in other relationships?
What have you held onto as you get through the times of feeling unsupported by family?
How have you navigated the body problems that have been present in your life?
Is there anyone in your life who has supported you in getting through these body problems?
What do you cherish about your life now?
What has made it possible for you to get to a life that you want to live?
Is there anything that you would want other people who are dealing with unsupportive families and body problems to know?