Big Feelings in the Pandemic: Wisdom from the BPD Superpowers group

Big Feelings in the Pandemic: Wisdom from 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.

BPD Superpowers group member Kay D’Odorico (who shared ‘a little bit of brave’ in the BPD Superpowers interview shared last week) created this BPD and Chill playlist on Spotify. “songs 4 my fellow babes w Borderline Personality Disorder – if anyone has ever told u that u are “a lot” or “too much”. Fck that, this playlist is just 4 u.”

And now, the post!

Digital Meetings on Indigenous Land

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

Shared experience

“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

Sharing strategies

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
Zine: A Warrior Princess call for contributions

Zine: A Warrior Princess call for contributions

Image is a person sitting on a couch, watching tv. On the tv is a stick figure with the quote, “That’s what friends do, they stand by each other when there’s trouble. – Gabrielle.” Beside the tv is the name of the project, Zine: A Warrior Princess. The quote is from the show Xena: Warrior Princess, spoken by the character Gabrielle.

I’m ready to start working on my next zine project!

This one has the potential to be a little lighter, a little more playful. 

This zine is about how pop culture is getting us through this time.

What is this zine about?

It’s about the lessons we’ve learned from our favourite tv shows, movies, comics, and books. It’s about how pop culture can invite us into an alternate world, and how these worlds have been safe and comforting spaces for us for many years.

It’s about the archetypes in the Princess Bride allowing us to see ourselves in a playful and generous light.

It’s about Buffy surviving a new apocalypse every season, and what hope that might offer for us as we face this particular apocalypse.

It’s about Steven Universe and She-Ra and Aang and Korra and Kipo and The Magicians and Elle Woods and Kamala Khan and Miles Morales and America Chavez and Kimberly Kane and Starbuck and Furiosa and Marge Gunderson and Elastica and Zoe Washburne and Veronica Mars and Minerva McGonagall and River Song and The Doctor and Jane Eyre and Phryne Fisher and Jo March and Alexander Hamilton (and Eliiiiiiiiiiiiiza) and Fem Shep and so many others, and it’s about how these characters, and the worlds they inhabit, the worlds they invite us into, make it more possible for us to get through the pandemic.

It’s also about pop culture personalities and how we navigate our relationships with celebrity (of whatever magnitude) in ways that make it more possible to get through the pandemic.

Prompts to get you started

What shows/books/comics/characters/etc are getting you through?

How?

Are you re-engaging with old favourites or discovering new ones?

What are the gifts of these pop culture offerings? What skills have they taught you? What values have they nurtured in you? What hopes have they sparked? What comfort have they offered?

Where did you discover them? Does appreciation of these characters or worlds or creators connect you to a community?

Do you share these shows, books, characters with others?

What have they made possible in your life?

What have they made possible in your pandemic life?

I think this will be a fun project and I’m really excited about it!

When and how to submit

I’ll be accepting submissions until the end of June, and hoping to share the zine by the end of July.

Send submissions by email.

Art, poetry, fiction, and essays welcome!

BPD Superpowers Interview with Kay and Sam

BPD Superpowers Interview with Kay and Sam

This is the video and transcript of an interview with Kay and Sam, which took place on August 24, 2019, in Calgary Alberta, as part of the Recognizing BPD Superpowers event.

Content notes for references to suicidal ideation and attempts, substance use, hospitalization (including involuntary hospitalization)

This transcript has been edited. It’s long, but I really hope you’ll read it or watch the video! At the event, I was incredibly moved by the tender, precious vulnerability shared here, and by the rich stories of survival and persistence. Far too often, Borderline Personality Disorder is described through a lens of pathology and stigma, articles are written about people identified with BPD, rather than by people identified with BPD. The BPD Superpowers project hopes to change that.

This interview is Part Two of the Recognizing BPD Superpowers event. You can read the text of Part One, a presentation on BPD, here.

Kay D’Odorico is a queer, neurodivergent human of Indigenous and European descent. They advocate for Sex Workers and own and operate their own perfuming business full-time here in Mohkinstsís.

Sam is just a human pursuing her best possible self. She is passionate about her recovery, her intersections, and wishes to hold space for others while creating it for herself.


Tiffany: I have the benefit of having known both Kay and Sam for years, and having worked with them in a variety of contexts. They’ve both been involved in each stage of this project.

So, Kay, you’ve been part of the project since our first narrative conversation, and I was wondering what was it that brought you to the group and what are your hopes for the project as it moves forward?

Kay: What brought me to the group, and really pushed me forward actually, was Osden, the co-facilitator who’s not here with us. They’re a very dear friend of mine, and seeing that they were so invested in this idea gave me a little bit of brave [laughs] to out myself, basically, to a roomful of strangers that I didn’t know. And it definitely was 100% worth it, otherwise I wouldn’t be here. For moving forward, I hope to continue to be able to facilitate conversations like this and educate a larger span and demographic of people, because I think it’s valuable work that we’re doing.

a little bit of brave

Tiffany: Yeah. I heard you say that Osden helped you find some of that bravery that was needed, and I’m curious, why was that bravery required? What is it about outing yourself in a roomful of strangers that required an extra dose of bravery?

Kay: Because I’ve experienced a great deal of bias and unfortunate circumstances because of naively telling people about my diagnosis before I really understood the amount of stigma that’s actually out there. I lost my job because I told my boss about my diagnosis, and I lost my apartment because I told my super about my diagnosis, so I had a lot of fear of rejection, like maybe I wasn’t going to be able to access certain parts of the community, or even my relationship with you, so. That was kind of the fear that was gripping me.

Tiffany: Mhmm. And what was it that you were hoping for or valuing that allowed you to hold onto that bravery and show up anyway?

Kay: Well I know that Osden is super kindred, a kindred spirit of mine and a kind witness, if you will, and I was hoping for all of those; a community that’s not forged on the psych ward. 

[everyone laughs]

Tiffany: Sam, I am curious about the same thing, but I’m also curious as well if there was anything in what Kay said that resonates for you.

Sam: Yeah, I think for me, I saw your posting about it and something in me just screamed ‘yes!’

Traversing diagnosis is a scary thing to do and disclosure consequences have been a huge part of my life. I’ve lost work, I’ve lost friends, I’ve lost relationships, even with myself, therapists, whatever have you. So then I was like, okay, ‘superpowers.’ It really got me into a place of curiosity and [feeling] strength-based. I tried to approach a therapist to create community like this and they werere like ‘no, it costs money, it can’t be free.’ So that puzzled me and then there you were. And I was so excited to just jump in. And I relate to what Kay said a lot in just the consequences of sharing and having to add some bravery to that. And it was something I was looking for, like how do I empower this part of me? How do I find that? And how do I learn from others who are doing the same?

Tiffany: Yeah. If you were gonna give a name to whatever it was inside of you that was screaming ‘yes!’ do you know what you would name that part of yourself?

Sam: I think just like…I would name it like, human, I don’t know…just like the human inside of me was like ‘Yes! Yes! Yes! Yes!’ there’s more to me than all these layers of diagnosis that have been thrust into me. Just the raw basic self.

there’s more to me than all these layers of diagnosis

Tiffany: Yeah. That, sorry…I should have better words, but I’m just like, ah, the human part, I love that! [laughs] And it’s interesting because I think in a lot of the discussions of BPD there is a dehumanising that happens, there’s a diminishing of the ability to connect or the ability to have…Rebecca Lester talks about it as like the urge towards health and happiness…I don’t think she used the word happiness, but. Yeah and I think it sounds like that’s what you’re talking about.

Sam: It is. That’s very much it.

Tiffany: One of the contributors to our project, Dottie Ayala, shared the following on her facebook page and has given us permission to use this quote in the resource.

With my BPD symptoms, I just can’t handle cognitive behavioural therapy or dialectical behavioural therapy, thanks to fucked up experiences in the past. And I don’t trust any therapists, because they’re only getting my point of view 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 realising I have BPD helped me to be able to recognise when I’m having a flare and prepare accordingly. Basically, mental health care can look really different for different people. I feel like my doctor’s act like I’m resisting treatment when really I’m just resisting being harmed more.

Dottie Ayala

So Kay, I was wondering if this resonates with your experience, and how you’ve learned what works for you and what doesn’t when accessing care and support, and also in navigating the ways in which BPD might show up in your life or in your relationships.

Kay: Well, I mean, I was kind of forced into it in a pretty aggressive way because I had a full meltdown, like with suicidal ideation and then follow through. So, I committed myself and I ended up in psych emerg for several days. And they formed me. And for anybody who has any knowledge of the system and how to access resources, being formed is when they basically take away your right to leave. So, I had committed myself willingly to the hospital because I felt like I was a danger to myself but then they formed me, which made me incredibly angry because they didn’t tell me what was going on. They used scientific words to basically tell me that I had no rights anymore, and I couldn’t leave when I wanted to, and then a week later, I was moved to this ward called short stay, and I still didn’t know what was going on and unbeknownst to me, the doctor had actually slapped the BPD label on me like, the first day of psych emerg, but nobody told me. And then I was put on short stay, which is the BPD ward at the Peter Lougheed. So, I was like, there’s an inordinate amount of people on this ward with Borderline Personality Disorder, this is really weird. And then like, I sit down and they’re like ‘you realise you’re on the Borderline ward and you have been diagnosed with Borderline’ and I was like, nobody told me!

I sit down and they’re like ‘you realise you’re on the Borderline ward and you have been diagnosed with Borderline’ and I was like, nobody told me!

And so I fought with the doctors every single day, because it was something that had been just completely just like…it almost felt like it was suffocating and crushing me. And like, my response to that was to not read any of the stuff that they gave me. And to like, basically shut everything out that I could, like to protect myself. And then when I did read it, it tore me to pieces. So that was kind of my experience going into it, with BPD. And so, my way of dealing with that has been, oh man, reading the things and realising that some of them do fit, like some of it did fit and some of it didn’t fit. And that also changes all the time. And I don’t talk about BPD with my family doctor. At all.

Tiffany: It’s interesting because I have been doing a fair bit of research because we’re creating a resource, and one thing that is written about fairly regularly is A: the disdain and contempt that a lot of mental health providers have for folks that have a BPD diagnosis, and B: a fairly normalised pattern of applying a diagnosis and not telling the person. So that experience of being diagnosed and then not having that diagnosis shared is common enough that it shows up regularly in papers about how clinicians engage with folks in the BPD community.

I don’t understand how that could be considered a helpful thing, but it is a thing that happens, so. I’m sorry you had that experience.

Kay: Me too.

Tiffany: The thing that really resonates for me in that, is that when you answered the first question, you said that you wanted to find community and to find people that you could share conversations with. It sounds like your first conversations about BPD did not include much kind witnessing. Was there a moment or experience that helped you hold onto the idea that you could find community despite those first crushing experiences?

Was there a moment or experience that helped you hold onto the idea that you could find community despite those first crushing experiences?

Kay: Yeah. So, on Unit 37, you’re not allowed to make friends. They discourage you from talking to other patients, and there’s usually somewhere around 15 people and you’re in a really small space and you all have rooms, and you have a roommate, but you can’t sit on your roommate’s bed. You can’t stay up late past bedtime talking to your roommate. You’re not allowed to touch. There are really, really strong rules about it, [they’ll] actually get security in there, and I would sit on my roommate’s bed, just like as a [holds up both hands with middle fingers up in a ‘fuck you’ sign] [laughs] just to the system in general. It’s like, stop discouraging intimacy, it’s dehumanising. So, I’d sit on my roommate’s bed and we’d just like hold each other’s hands because it’s traumatic, being there. Engaging with these health care professionals that very, very clearly hold great disdain for you, and exhibit racist tendencies, and bigotry to the max, so I fought that at every chance I could.

When we went out for cigarette breaks, we would hug. Whenever we were out of eyesight or earshot, we would make friends and we would bond. And I made a best friend who I still talk to and I still support. She moved to Toronto to pursue becoming a musician and she was the first inkling of the beautiful little sparkle of community that I could identify [with] very strongly. It evoked a love in me that I didn’t know I had, because it was this shared experience of the ward, but also the world. So you get off the ward and then it’s the real world, and like, they try to set you up as best as they can, but you’re never gonna get ready for what’s gonna happen, so, yeah. We were there for each other when it was the world instead of the ward.

We were there for each other when it was the world instead of the ward.

Tiffany: I love that idea of BPD solidarity like against oppressive systems and within hostile institutions.

[turning to Sam] Was there anything in there that resonates for you? How did you find what works for you and what doesn’t?

Sam: Yeah, I had unique experiences, as each person does. My diagnosis came with several. I did feel part of the diagnosis process. I had been struggling immensely in many aspects of my life and my career, and I was at the point where I was in Edmonton, and I checked into a hospital. They kept me for a day, like different perspectives, you know. Often the psych teams come at random times, they don’t really inform you why or how they’re doing it. And opinions can vacillate so extremely. You know, so someone said ‘oh, you’re just having a nervous breakdown, this is normal, this can happen.’ And they’d send me home. And I would destabilise more and come back, and they would tell me…I had one professional say ‘you are absolutely a danger to society and you need to stay for a very long time.’

And that was very confusing. Because one person, two days before, said no this is normal, the next person says you’re unstable.

So, I was formed as well. And I was formed for a month. And in that time, a lot of journey happened. I learned with the psychiatrist I was working with, he was really good at being informative, but also still dehumanising, so I had the opportunity to have my mother come and have discussions and kind of engage in conversation. But at the end of the day, I was still given a diagnosis that I was not comfortable with, and it took a long time.

at the end of the day, I was still given a diagnosis that I was not comfortable with

In my situation, I had the opportunity in a very privileged way to access resources without a lot of financial burden myself. I went through a lot of different types of therapy. From exposure therapies, to DBT therapy, to so many different types; CBT, what have you, I have done it. And in those experiences, I can really relate to Dottie that trusting a therapist is super scary. I still struggle with it and I’m still very involved with therapy.

It gets to a point for me where I don’t know what life is anymore. I only know how to psychoanalyse and can associate well ‘this is BPD, I’m BPD,’ you know. There is no room for me to have any sense of just ‘I’m a human being with human experiences’ and I don’t trust therapists super freely, because I either feel like they under relate or over relate, and I’m learning there’s a delicate balance. There gets to a point for me, where therapy is only so useful. And there comes a time where I would rather just experience society and those relationships kind of on a grass roots level, more of a narrative direction than a clinical environment.

Though I have to say, there are so many aspects of each type of therapy that are little golden nuggets that I can take away. I do feel DBT was developed in a very obscure way and Marsha Linehan, who’s the founder of these principles adopted it from many, many places, from CBT, from Zen Buddhism, and kind of incorporated her own brand. But I feel like it is essentially a part of capitalism. You know, to have a DBT program, you must have this much and do this. In Calgary, access to free DBT is 17 months’ [wait] at least.

The program from other’s experiences has been sketchy in my perspective. I went privately and it cost me an arm and a leg. Again, I had the opportunity to have funding in that way so I was very, very, very privileged. I think that there are so many little nuggets that DBT taught me, you know, like distress tolerance, when I was so suicidal that I was pushing people away or they were just literally scared to be near me because I was so unable to regulate that. And those little things really did help.

But I think there comes a time where I’ve outgrown a lot of aspects of therapy. And I’m tired of pathologising human experience. There’s so much more and this group, this Superpowers, has really allowed me to like, let go of the need to have BPD as my identity and simply relate in a way that’s different for me. And there’s some train of thought that BPD does not actually exist. The symptoms of behaviours are still of course valid, but that it could be a form of Complex PTSD rather than this ‘personality issue,’ and I think identifying something wrong with your core foundation is really fucking harmful.

I’m tired of pathologising human experience

Tiffany: Mhmm I would agree.

One thing that really jumps out at me, actually about both of your stories there, is that at the beginning of these journeys there was a moment of self-awareness and an action of very active self-preservation. Both of you took an action of checking into a hospital and then were met with, like I know that the stories are different, I want to honour those differences, but there’s also a shared experience of self-awareness and cherishing your own life enough to take that action to preserve it, and then running into what sounds like in both cases, a system that then really dehumanised and diminished and didn’t acknowledge that active agency, and that choice of doing what would make your life possible. So, that’s not a question, but I just wanted to note that, because that feels important.

Kay: I never thought about that. [laughs]

I mean, I felt that and I knew it, but I hadn’t heard it, so you’re right. We did do that, and nobody said thank you for doing this, for sticking around even though it’s scary as hell. [points to Sam] Thank you. [Sam points back and says Thank you]. That was my aggressive point. [laughs]

nobody said thank you for doing this, for sticking around even though it’s scary as hell

Sam: I just wanna comment on that. As someone like, I still struggle with ideation, not so much now, but it’s still a big part of my day. And Calgary hospitals had been unrelentingly unhelpful. Being a repeat patient for issues that continue to happen. I don’t know why but I’ve been told directly from psych teams, ‘people with BPD don’t belong in hospital.’ That ‘you need to go now, you have BPD, you’re gonna get way too attached.’ I’m like ‘listen it’s been two and a half weeks, and I can’t leave my home today. It’s so bad I cannot function,’ and being told ‘well this is how we’re gonna treat you,’ and it’s gotten to a point that seeking help in those times is very, very, scary.

I write a letter and I don’t tell them anything, until I’m at a place knowing that I’m going to spend 24 hours, up to 96 hours, in an ER where nurses actively work to devalue you. You know, I feel like ERs are not supportive of things they can’t see. And that’s something we’re going to fight like hell to change, cause it can’t keep happening.

Tiffany: What do you hold onto in those moments; what keeps you connected to that sense of humanity or the part of yourself that you named as ‘human’ that was screaming yes for connection? How do you hold onto that in contexts where you know that you’re going into a hostile but necessary space?

What do you hold onto in those moments; what keeps you connected to that sense of humanity or the part of yourself that you named as ‘human’ that was screaming yes for connection?

Sam: Ahhhh [big sigh]. The will to live. I feel that in many forms of the recovery moments, I need to hold on and go through these experiences because I know this is what I need to stay safe and that one day, just maybe, there can be enough ripple effect that I can be that change. That’s all I’ve ever wanted is to make impact in the world for the better.

Tiffany: I think just speaking from myself, because we have intersected and collaborated in many spaces over many years, I certainly have been impacted by your role in my life. And I think like obviously I’m not [gestures towards the audience], but I imagine this is a very moving thing for me to hear and I imagine it might be moving for folks out there, too, so I think that that impact is happening.

One common theme is that there’s this idea that BPD renders you incapable of making your own choices and decisions, that BPD kind of like, drives the bus. That’s part of that dominant discourse. And what I hear when you talk about being the change, or making a ripple, is a strong connection to a sense of agency.

So, I guess I’m curious, are there people in your life who know that you cherish that ability to make a change?

Sam: Yeah, absolutely. My mom is a huge person who tells me quite frequently, like, if you want something, like you’re gonna go for it. And there’s been lots of different places where people see that innate agency within me. And I don’t know how it developed, I think trauma probably, enough trauma, to say like, fuck this, this is not my story. Finding support anywhere I can, whether it is the person on the street who can relate in ways that the bureaucrat cannot. I don’t know, it’s everywhere, and it’s so little, but it’s tiny shifts, tiny, tiny shifts. And I think of course recognising I’m very privileged, and so I have very different intersections than more marginialised folks and I acknowledge that today.

Tiffany: That sort of ties into the next question that I had written. Difficulty in relationships is one of the most common traits associated with BPD and yet our BPD Superpowers group has maintained such a strong focus on community and the role of cherished friends and community members and family. That came up again, and again, and again in our conversations.

So Kay, I was wondering, who in your life has been supportive in helpful ways and what have they done that’s been helpful, how has that community shown up for you?

who in your life has been supportive in helpful ways and what have they done that’s been helpful, how has that community shown up for you?

Kay: [laughs] This is like, I can talk about myself and that’s okay. My husband, like…it makes me cry every time…ahh [big sigh], so definitely my husband, my spouse Brandon. He was there every single turn, not sometimes embracing the more dark corners that I had, but still witnessing them, and knowing that I had that agency. And I had the strength and the passion and the compass inside of me; that I was the expert. He just was there in crucial moments where I felt like I was bubbling; he just stood there and was my witness and believed that I would figure it out.

And that spoke volumes, because there was a point, kind of like, my darkest hour, I had not a single friend. I didn’t even have one. But Brandon was there. And he let me do whatever I needed to do. He never gave me guilt trips, or shamed me for the way that my mental health was presenting itself. And always generally just told me, ‘you’ve got this. I trust you with your own life.’

‘you’ve got this. I trust you with your own life’

And that meant everything. Just having one person in my corner. I was like, I don’t have family connections, I don’t have any close friendships because it did all burn down at a point, like, you know, I was a toxic individual in all of my communities and all of a sudden every single door I thought I had was closed. And he just stuck around. And like, stuck around enough that we now go to relationship therapy and identify ways that we can communicate better, and it betters my other connections that I now have, and I value him so much. He’s like the best part of life.

Tiffany: What really jumps out at me in what you shared there, was the way you phrased, ‘not necessarily embracing but witnessing every part of you.’ I was wondering, what does it look like, or what are the actions that can be associated with not embracing, but witnessing? How does that show up in your relationship?

Kay: Well, I mean, I have a really dire relationship with most substances. To the point where I’d be pretty much drunk all the time, and it was impacting me in ways that I had no idea. And this has gone on since I was 19 years old and reached a fever pitch about 3 years ago, so the last 3 years have been the drunkest of my life, and not in a fun way. And other substances got involved, but even then, even when I told Brandon what was going on, he was still like ‘okay, fine, I can’t change things for you, and like, this is how you’re coping right now. Please, please come to me if you feel like talking about this or you feel I can help you in some way.’

And so I knew that there was no shame associated with that coping mechanism, any of my coping mechanisms, like self-harm. He [would say], ‘okay, so you’re gonna go in the bathroom and you’re gonna cut.’ We had a conversation about it. ‘What are you doing right now about that?’ And I was like, ‘I am cutting to release all of the feelings’. And so he’s like, ‘so you’re not cutting to kill?’ And I was like, ‘I am not cutting to kill.’ And he said, ‘okay, well there are little bandages and sutures in there, there’s clean razors in there, there’s alcohol in there, and can I just sit on the other side of the door?’

And I said ‘yes, thank you.’ And closed the door and did what I had to do, and felt his support through a door while I was self-harming.

So, like at that point that’s what it looked like. And then with my alcoholism and substance abuse, he let me ride that to the point of almost pure and absolute self-destruction, but still with the absolute faith and lack of judgement that I would figure it out. And I did. And every single day, he’s like, ‘I’m so proud of you, I know how hard this is, and I know it’s every day.’

every single day, he’s like, ‘I’m so proud of you, I know how hard this is, and I know it’s every day.’

Tiffany: It’s interesting because that story really runs counter to a lot of dominant narratives around both substance use and self-harm, and actually around mental health too, and the idea of enabling as a thing that can happen, a negative thing. It sounds like part of what Brandon has offered is space for you to make the choices that you are going to make without judging you for them, and helping you make them in ways that allowed you stay as safe as possible within that. That’s really powerful. I wish I had a better response to that, but it just really jumped out at me how that story of what was helpful really stands against some of the discourses that we have, that say that in order to be helpful, people need to like, not allow, or control access to, or other things like that.

[to Sam] You shared about your mom who is really meaningful to you, and I was wondering if there have been other people in your life that have supported you in helpful ways, or what has been helpful. Or if anything resonated about what Kay shared.

Sam: Oh, man. It really brought me to an emotional place with that.

Kay: Me too.

Tiffany: Me too.

Sam: Yeah, I think that the word that comes out for me is harm reduction. The idea that if people don’t have safety in like, housing or food opportunities or like, love, basic needs, that they’re probably not going to magically get better. And I think that’s really valid.

I’ve had lots of different experiences with acceptance. My family’s pretty great at like, oh, what do you want today, it’s sobriety, great, like go give ‘er, or oh, you’re in a place of using, well, we support that, and it was really confusing for a long time, cause I’d use that as justification. I’m like, everyone thinks me using is a great idea, like, even my professional team was like, okay, you’re using. And I was like, waiting for the hammer to come down and like, it didn’t happen. But in doing that it really allowed me to want change for me.

it really allowed me to want change for me

I’m quick to think, ‘what do you need, what do you want, how can I be perfect like okay don’t show BPD, don’t do it.’ And so learning that agency piece again has been really big.

I have the privilege of having someone in my life where we’ve run through the gamut of aspects of enabling codependency and I definitely think that can be a part of any relationship right? It’s such a fine line for me. I was in a very codependent relationship and that is my pattern, just to feel safe. I don’t know now if that’s just my own internal stigma and pathologising, but learning that despite my challenges, there is someone who, no matter where I’m at, might need boundaries that I don’t always like, but will be there. Someone who just silently roots for me.

Sober spaces are a big, important aspect of my life today, and I find 12 Steps helpful. Not always, but I remember how many times I [would] go out and actively use or come back and want recovery, and somebody just simply says ‘hey, glad you’re here.’ Not ‘where the fuck were you, why aren’t you…’ just ‘hey, I’m glad you’re here.’

You know, my family has showed up in lots of ways, too. No one says, ‘you’re going to the hospital again?’ They’re like ‘Okay. Do you want visitors?’ So, there are really subtle ways.

My DBT therapist also has been very good. There’s aspects of the self-harm for sure, of like, ‘okay, we have self-harmed.’ Rather than, ‘you have self-harmed. Here is the punishment.’

And I think flexible boundaries, but boundaries, are really helpful for me, so that witnessing, what Kay said, rather than controlling or enabling, is so subtle. I don’t know if I have it figured out quite yet, but seeing that I can also do that with others, cause I’m quick to enable. ‘Oh, I need you to love me, I need you, okay whatever you do, that’s great,’ like…and I’m learning through examples, that there is a space where I can witness and hold space without controlling.

Tiffany: One thing that really jumped out at me as we were talking was the idea that it allowed you to choose to change for yourself, and I’m curious how you have figured out, or what has helped you connect with the ways that you want to change? How do you figure out where you want to go?

Sam: Yeah. Meditation is a big cornerstone, so I really have to work at understanding what’s in my body, what’s in my deepest sense of self, and quieting down the stimulus that happens outside. So taking that time to really like, do bodywork and sit in emotion. For me here up [motions indicating from the neck up] my body has often been a war zone. It’s not safe, it doesn’t feel good, I don’t want to be in it, and just that slow, steady, somatic invitation, and then like, journaling, writing, like, trial and error, you know? I have unrelenting standards, and so just process and recognising…giving myself permission to be utterly, completely messy. Cause that’s human to me.

I have unrelenting standards, and so just process and recognising…giving myself permission to be utterly, completely messy. Cause that’s human to me.

Tiffany: Mhmm. I wanna go off my script here, because I’m really curious about the idea of boundaries, and how boundaries can be set in a way that doesn’t feel controlling, but does feel… ‘good’ is such a silly word, but it’s the only word that’s coming.

So, I guess what I’m wondering is, what does it look like when someone sets a boundary that, like you said, might not feel good for you, but is a necessary part of that relationship? Are there specific actions or ways of talking about that or enacting that boundary, that are helpful or that invite you to be a part of that process, or that make it possible for you?

Sam: Yeah, I’m super sensitive to perceived rejection, absolutely. Where I really have struggled…the word ‘good’… my language shift is ‘effective’.

Where it’s really effective for me is when someone invites me. Not into the decision, but the process of the boundaries. So [something] has been violated, boundaries are very contextual things, and if something has crossed said boundary, if they invite me in and say ‘hey, you know when you called me 16 times yesterday? That crossed my boundary.’

There’s an action, there’s something that they’ve admitted that they need, there’s a vulnerability piece, and then it’s like, ‘I realise that you need support, I cannot be that support on that level. What do you think you or we could do to help you through that?’ So just issue, consequence, and follow-through as well. I like consistency a whole lot, because it helps me feel safe. So, if this continues to happen, the consequence will be I will have to set even further boundaries with you.

And that role modelling really, really invites me to know and trust that if and when I cross people’s boundaries, I know that they have enough respect and love for me that they’re gonna actually come back to me and be like, ‘okay, this has happened,’ versus like ‘you’re BPD, you’re messed up, bye!’ and that tends to be how things go.

Tiffany: It’s interesting. It makes me think of both the narrative therapy foundational principle that the person is not the problem, the problem is the problem, and the solution is not individual. And it also makes me think of Rebecca Lester saying that BPD is attenuated through relationship; that you can co-create a space that makes it possible for that to just be part of the context you’re creating together.

[To Kay] I heard you going ‘Mmm’ a few times, and I wanted to ask, what do you think about this boundary conversation? Are there ways that boundaries have shown up in your relationships that have been effective.

Kay: Well, it’s funny because like I said, I really rejected a lot of the ways that people describe BPD. So, I was like, ‘I don’t take rejection hard, I just like being considered.’

So, when you said, ‘being a part of the process of boundary setting,’ [that] is consideration, it’s valuing someone enough to involve them in the conversation about what’s going on, rather than just cancelling them outright, which can explode everything. And, I mean…[laughs] there’s…I don’t know, it’s a really confusing situation for everyone to be in, because everybody has the right to have a safe relationship, and to know their own needs and their own desires, but I feel like we also have a responsibility to each other in our intimate friendships and relationships where it’s like, ‘no you can’t just cancel me.’ Like, my heart is broken, and I still don’t know [why].

it’s valuing someone enough to involve them in the conversation about what’s going on, rather than just cancelling them outright

So when somebody does set that boundary, and has me be a part of the conversation, I’m yours for life. There’s trust there, instead of just confusion and pain. And that’s my number one trigger in pretty much every situation, I can trace it back to somebody not asking me how I felt or where I was at. It’s like, ‘why aren’t you considering me in this?’ And why am I not valid in this context, as a part of it, and integral part. So, yeah. [laughs]

Sam: That really spoke to me on those boundaries. Thank you.

Tiffany: It’s interesting because that idea of being invited into the process, not necessarily, I don’t think I’m hearing from either of you that being invited into the process means being in control of it or having any kind of veto power over people’s boundaries, but having the courtesy of being told what the boundaries are, that sounds really important. And there are narratives about BPD as being controlling or manipulative and unreliable and untrustworthy, and in this conversation about boundaries, it sounds like maybe some of those descriptors might not encompass the whole humanity of the people that are being described.

So the last question that I planned for us today has to do specifically with the superpowers that we’ve identified in group conversations. I was wondering, Kay, if you could speak about which of these superpowers you have a particularly close relationship with, and what that looks like for you?

The BPD superpowers that we identified were:

  • The superpower of community and community care
  • The superpower of showing up
  • The superpower of resilience
  • The superpower of endurance
  • Dialectics as a superpower, meaning holding multiple true stories at once
  • Superpowers of empathy and compassion
  • The superpower of quick turnaround of emotions
  • The superpower of being able to get out of a bad situation
  • And the superpower of chameleoning and flagging. Chameleoning being the ability to blend into situations, and flagging being the ability to signal to other people parts of their identity.

Kay: Good, okay. Well, probably 75% of that list.

The things that jump out at me personally that I know I am ‘super’ at are chameleoning. It’s interesting because it is so often framed as manipulative behaviour. And oftentimes it is also thrown in with a bunch of other personality disorders I was slapped with. It’s like, ‘you’re doing this to impress people, you’re doing this to like, whatever, survive,’ and it was [framed as] a negative coping mechanism. But it’s actually a superpower, so I definitely feel that.

And that also feeds my resistance and my resilience, and I feel like we’re really good at holding on and believing that there is better and more and I definitely feel… I guess community wasn’t really one that stuck out at me, that’s not really my strong suit, but chameleoning and empathy are probably my number one.

It’s like, feeling those strong feelings.

Someone said the word trauma bonding to me the other day and I was like ‘that sounds like a negative thing like in the way that you said it with your voice and the inflection; I don’t think I like it.’ And she had to stop and be like, ‘well you know honestly, it usually is perceived to be a really bad thing, like, you’re just using your trauma to bond,’ and I was like ‘oh, but that’s what we do [laughs] and that’s how things happen and like, it happens to someone else.’ And she’s like ‘okay well maybe it’s codependent,’ so she threw a bunch of unhelpful stuff at me and I was just like ‘fuck this I’m taking back trauma bonding.’

‘fuck this I’m taking back trauma bonding.’

I mean, my empathy helps me connect to people that have been in difficult situations and I’ve been like that since I was a child. And I always thought that there was something wrong with me that I could feel these things with such overwhelming reality, like sometimes it would displace my own self and it would just be me in a sea of so much human difficulty. And I would see it and I would be so overwhelmed I would shut myself off and not know what to do. I’d be frozen because my powers of empathy I had not yet learned to control. [laughs] or like, work with, I guess. So that’s where empathy is definitely the one that I really feel. All the time.

Tiffany: I have read quite a bit about trauma bonding and you’re right, it is often framed as a negative thing. And I can see how there are situations where it can introduce problems to a relationship or to people’s lives.

But like, we never talk about ‘boardgame bonding’ in the same stigmatizing terms even though any kind of relationship based entirely on shared experience can hold space for unpleasant parts of that relationship or unpreferred parts of that relationship.

[to Sam] I’m gonna ask you the same thing.

Sam: I think for me a big aspect that really resonates is just like the ability to sense people, sense emotion, and show up and care, cause I know my needs and wants around human connection are less than surface, it’s fairly deep-rooted.

And so I look for opportunities to show up for others in those ways. And in a lot of feedback that I’ve received from family and friends [they’ve said] ‘wow, you’re so genuine and caring, like I just feel so loved. You’re so thoughtful and I appreciate that’

And what Kay said is that that’s often pathologised as a ‘dependent personality’ or ‘histrionic’ or like, ‘fuck off’ [laughs] you know, like, when is being genuine a great thing and I think this superpower discussion completely hits that on the head.

I can sense, I feel like a canary in the mine quite often. Things are just starting to get like ‘oooh this is dangerous.’ I can empathise and show up and just say, ‘you know, I’m feeling stressed about that, how ‘bout you?’

I think flagging, it’s definitely a big thing. Like I flag mental illness fairly frequently, and while it’s a very tricky thing to do, and has much consequences, I think those consequences do not outweigh the benefit of just saying ‘I have mental illness’ cause that conversation is huge.

I flag mental illness fairly frequently, and while it’s a very tricky thing to do, and has much consequences, I think those consequences do not outweigh the benefit of just saying ‘I have mental illness’ cause that conversation is huge.

You know, I used to work in health care, and it was delicate, coming out with mental illness, or having anything that made you possibly susceptible. And I refuse to hold it in anymore. Welcome, you’re welcome. I am not an island, you are not an island. Here we are, many of us. So, that’s a big thing I try and do.

I also think that the ability to chameleon is huge.

My resilience is probably one of my strongest traits, like, you give me something that I should not have or maybe not good to survive and I will. Why? Because that’s all I know. There’s no choice not to. It’s simply this is awful thing is hard, you know. Whether it’s been medical experiences I have gone through the ringer. I don’t know how, I don’t know how I did it. And I did.

So, I think people who survive or live with marginalisation or challenges and are slapped with this diagnosis actually are far more versatile, you know? BPD is like ‘oh they can’t do this and they’ll struggle’ well fuck yeah, they will, AND where’s the part that they get through it? Where’s that part of it? So this superpower concept like, has often given more grace than three and half years of consistent therapy ever did.

Tiffany: One of the things that was identified in our conversations was the idea that folks with BPD, for a variety of reasons, often have very well-developed skills for navigating complex persistent traumatic experiences. And right now, there are a whole lot of people in the world looking at climate crisis, and rising facism and late-stage capitalism, and experiencing persistent traumatic feelings.

folks with BPD, for a variety of reasons, often have very well-developed skills for navigating complex persistent traumatic experiences

So I think it would actually be very interesting if we could figure out a way, and that’s one of the goals of the resource, to take some of these skills that have been developed by folks with BPD diagnoses and teach other parts of the community how to navigate big, intense, persistent negative feelings.

Because I look at my facebook page, and I think there are a lot of folks who have not really been confronted with big, persistent, negative feelings that get really overwhelming, and there are skills within, there are insider knowledge within, folks who have BPD that would be helpful for a lot of people who right now might not ever have had to navigate that experience.

The last thing I wanted to ask was whether there’s anything that either of you really wanted to talk about that I missed in my questions, or that has come up in our conversation that you wanted to circle back to, or just open up a little bit of space for either of you.

Kay: I’m good. I also love that we’re kind of wrapping it up with the future in mind because I feel like so often I feel like a lot of us don’t have… we feel like we don’t have a settling spot, we don’t have a place to feel safe, we literally don’t. Like there are very few places we can go where we know deep in our souls we’re safe.

So, like, we have our online communities, we have small discussion groups, but like, giving me even the suggestion of somebody else valuing my perspective and lived experience makes me feel good. So, I love that we ended it with that, because it’s like yeah, we are absolutely assets to society. We do deserve to be in hospital. We do deserve to tell our stories and be valued members of society, so, and I’m looking forward to that because like… I’ll never forget, my boss sat me down and was like, ‘yah, like honestly? The way you’ve been acting, like there’s no excuse for it. Everybody has things that go wrong,’ and I looked at her and I was like ‘call me when your mom dies, cause I’ll be ready.’ I still feel that way, I’m like call me, because I’ll know how to navigate that pain with you and witness you with kindness and empathy. And that kinda goes with everybody that’s gonna slowly realise that all of this shit is gonna come back to every one of us. So, we’re here and we can help! [laughs] firefighters! [laughs]

giving me even the suggestion of somebody else valuing my perspective and lived experience makes me feel good

Tiffany: [to Sam]: Was there anything that you wanted to talk about that we didn’t get to or that you wanted to come back to?

Sam: I think the biggest thing that is so important, is anyone who tells you ‘you’re too sensitive’ or ‘you’re not blank…’ is just like, fuck them, number one!

Number two, I think it was really mentioned in here is challenging the bias that exists in others. Because when someone is deeply uncomfortable with who I am, it has nothing to do with me. Because it’s their own process where they are uncomfortable. They often don’t recognise their own emotional needs, and it is a deeper reflection of maybe their own stuff. And so my whole life has been ‘too much’ for others, and I’m learning, that’s theirs! I am just okay today so I just want to thank people for holding space. I just wanna like, squeeze you but I won’t, but like, thank you. Like Kay said, I’m glad that we’re focussing on the future. That’s wonderful.

my whole life has been ‘too much’ for others, and I’m learning, that’s theirs!

Note from Tiffany: If you wanted to offer any witnessing to Kay and Sam, please email me and I will pass it along.

Recognizing BPD Superpowers

Recognizing BPD Superpowers

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.

Introduction

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.”

Reclaiming Power and Place: The Final Report of the National Inquiry into Missing and Murdered Indigenous Women and Girls

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.”

Lester, Rebecca J. (2013) “Lessons from the Borderline: Anthropology, Psychiatry, and the Risks of Being Human.” Feminism & Psychology, 23(1): 70-77.

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.”

Lester, Rebecca J. (2013) “Lessons from the Borderline: Anthropology, Psychiatry, and the Risks of Being Human.” Feminism & Psychology, 23(1): 70-77.

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.”

Mayo Clinic, Personality Disorders

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
  • Self-damaging behavior
  • Distorted self-image
  • Dissociation
  • 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.”

Wikipedia

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.”

I agree.

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.

Lester, Rebecca J. (2013) “Lessons from the Borderline: Anthropology, Psychiatry, and the Risks of Being Human.” Feminism & Psychology, 23(1): 70-77.

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 SUPERPOWERS

  • The Superpower of Community (and community care)
  • The Superpower of Showing Up
  • Resilience
  • Endurance
  • 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.