This is the video and transcript of an interview with Kay and Sam, which took place on August 24, 2019, in Calgary Alberta, as part of the Recognizing BPD Superpowers event.
Content notes for references to suicidal ideation and attempts, substance use, hospitalization (including involuntary hospitalization)
This transcript has been edited. It’s long, but I really hope you’ll read it or watch the video! At the event, I was incredibly moved by the tender, precious vulnerability shared here, and by the rich stories of survival and persistence. Far too often, Borderline Personality Disorder is described through a lens of pathology and stigma, articles are written about people identified with BPD, rather than by people identified with BPD. The BPD Superpowers project hopes to change that.
This interview is Part Two of the Recognizing BPD Superpowers event. You can read the text of Part One, a presentation on BPD, here.
Kay D’Odorico is a queer, neurodivergent human of Indigenous and European descent. They advocate for Sex Workers and own and operate their own perfuming business full-time here in Mohkinstsís.
Sam is just a human pursuing her best possible self. She is passionate about her recovery, her intersections, and wishes to hold space for others while creating it for herself.
Tiffany: I have the benefit of having known both Kay and Sam for years, and having worked with them in a variety of contexts. They’ve both been involved in each stage of this project.
So, Kay, you’ve been part of the project since our first narrative conversation, and I was wondering what was it that brought you to the group and what are your hopes for the project as it moves forward?
Kay: What brought me to the group, and really pushed me forward actually, was Osden, the co-facilitator who’s not here with us. They’re a very dear friend of mine, and seeing that they were so invested in this idea gave me a little bit of brave [laughs] to out myself, basically, to a roomful of strangers that I didn’t know. And it definitely was 100% worth it, otherwise I wouldn’t be here. For moving forward, I hope to continue to be able to facilitate conversations like this and educate a larger span and demographic of people, because I think it’s valuable work that we’re doing.
Tiffany: Yeah. I heard you say that Osden helped you find some of that bravery that was needed, and I’m curious, why was that bravery required? What is it about outing yourself in a roomful of strangers that required an extra dose of bravery?
Kay: Because I’ve experienced a great deal of bias and unfortunate circumstances because of naively telling people about my diagnosis before I really understood the amount of stigma that’s actually out there. I lost my job because I told my boss about my diagnosis, and I lost my apartment because I told my super about my diagnosis, so I had a lot of fear of rejection, like maybe I wasn’t going to be able to access certain parts of the community, or even my relationship with you, so. That was kind of the fear that was gripping me.
Tiffany: Mhmm. And what was it that you were hoping for or valuing that allowed you to hold onto that bravery and show up anyway?
Kay: Well I know that Osden is super kindred, a kindred spirit of mine and a kind witness, if you will, and I was hoping for all of those; a community that’s not forged on the psych ward.
Tiffany: Sam, I am curious about the same thing, but I’m also curious as well if there was anything in what Kay said that resonates for you.
Sam: Yeah, I think for me, I saw your posting about it and something in me just screamed ‘yes!’
Traversing diagnosis is a scary thing to do and disclosure consequences have been a huge part of my life. I’ve lost work, I’ve lost friends, I’ve lost relationships, even with myself, therapists, whatever have you. So then I was like, okay, ‘superpowers.’ It really got me into a place of curiosity and [feeling] strength-based. I tried to approach a therapist to create community like this and they werere like ‘no, it costs money, it can’t be free.’ So that puzzled me and then there you were. And I was so excited to just jump in. And I relate to what Kay said a lot in just the consequences of sharing and having to add some bravery to that. And it was something I was looking for, like how do I empower this part of me? How do I find that? And how do I learn from others who are doing the same?
Tiffany: Yeah. If you were gonna give a name to whatever it was inside of you that was screaming ‘yes!’ do you know what you would name that part of yourself?
Sam: I think just like…I would name it like, human, I don’t know…just like the human inside of me was like ‘Yes! Yes! Yes! Yes!’ there’s more to me than all these layers of diagnosis that have been thrust into me. Just the raw basic self.
Tiffany: Yeah. That, sorry…I should have better words, but I’m just like, ah, the human part, I love that! [laughs] And it’s interesting because I think in a lot of the discussions of BPD there is a dehumanising that happens, there’s a diminishing of the ability to connect or the ability to have…Rebecca Lester talks about it as like the urge towards health and happiness…I don’t think she used the word happiness, but. Yeah and I think it sounds like that’s what you’re talking about.
Sam: It is. That’s very much it.
Tiffany: One of the contributors to our project, Dottie Ayala, shared the following on her facebook page and has given us permission to use this quote in the resource.
So Kay, I was wondering if this resonates with your experience, and how you’ve learned what works for you and what doesn’t when accessing care and support, and also in navigating the ways in which BPD might show up in your life or in your relationships.
Kay: Well, I mean, I was kind of forced into it in a pretty aggressive way because I had a full meltdown, like with suicidal ideation and then follow through. So, I committed myself and I ended up in psych emerg for several days. And they formed me. And for anybody who has any knowledge of the system and how to access resources, being formed is when they basically take away your right to leave. So, I had committed myself willingly to the hospital because I felt like I was a danger to myself but then they formed me, which made me incredibly angry because they didn’t tell me what was going on. They used scientific words to basically tell me that I had no rights anymore, and I couldn’t leave when I wanted to, and then a week later, I was moved to this ward called short stay, and I still didn’t know what was going on and unbeknownst to me, the doctor had actually slapped the BPD label on me like, the first day of psych emerg, but nobody told me. And then I was put on short stay, which is the BPD ward at the Peter Lougheed. So, I was like, there’s an inordinate amount of people on this ward with Borderline Personality Disorder, this is really weird. And then like, I sit down and they’re like ‘you realise you’re on the Borderline ward and you have been diagnosed with Borderline’ and I was like, nobody told me!
And so I fought with the doctors every single day, because it was something that had been just completely just like…it almost felt like it was suffocating and crushing me. And like, my response to that was to not read any of the stuff that they gave me. And to like, basically shut everything out that I could, like to protect myself. And then when I did read it, it tore me to pieces. So that was kind of my experience going into it, with BPD. And so, my way of dealing with that has been, oh man, reading the things and realising that some of them do fit, like some of it did fit and some of it didn’t fit. And that also changes all the time. And I don’t talk about BPD with my family doctor. At all.
Tiffany: It’s interesting because I have been doing a fair bit of research because we’re creating a resource, and one thing that is written about fairly regularly is A: the disdain and contempt that a lot of mental health providers have for folks that have a BPD diagnosis, and B: a fairly normalised pattern of applying a diagnosis and not telling the person. So that experience of being diagnosed and then not having that diagnosis shared is common enough that it shows up regularly in papers about how clinicians engage with folks in the BPD community.
I don’t understand how that could be considered a helpful thing, but it is a thing that happens, so. I’m sorry you had that experience.
Kay: Me too.
Tiffany: The thing that really resonates for me in that, is that when you answered the first question, you said that you wanted to find community and to find people that you could share conversations with. It sounds like your first conversations about BPD did not include much kind witnessing. Was there a moment or experience that helped you hold onto the idea that you could find community despite those first crushing experiences?
Kay: Yeah. So, on Unit 37, you’re not allowed to make friends. They discourage you from talking to other patients, and there’s usually somewhere around 15 people and you’re in a really small space and you all have rooms, and you have a roommate, but you can’t sit on your roommate’s bed. You can’t stay up late past bedtime talking to your roommate. You’re not allowed to touch. There are really, really strong rules about it, [they’ll] actually get security in there, and I would sit on my roommate’s bed, just like as a [holds up both hands with middle fingers up in a ‘fuck you’ sign] [laughs] just to the system in general. It’s like, stop discouraging intimacy, it’s dehumanising. So, I’d sit on my roommate’s bed and we’d just like hold each other’s hands because it’s traumatic, being there. Engaging with these health care professionals that very, very clearly hold great disdain for you, and exhibit racist tendencies, and bigotry to the max, so I fought that at every chance I could.
When we went out for cigarette breaks, we would hug. Whenever we were out of eyesight or earshot, we would make friends and we would bond. And I made a best friend who I still talk to and I still support. She moved to Toronto to pursue becoming a musician and she was the first inkling of the beautiful little sparkle of community that I could identify [with] very strongly. It evoked a love in me that I didn’t know I had, because it was this shared experience of the ward, but also the world. So you get off the ward and then it’s the real world, and like, they try to set you up as best as they can, but you’re never gonna get ready for what’s gonna happen, so, yeah. We were there for each other when it was the world instead of the ward.
Tiffany: I love that idea of BPD solidarity like against oppressive systems and within hostile institutions.
[turning to Sam] Was there anything in there that resonates for you? How did you find what works for you and what doesn’t?
Sam: Yeah, I had unique experiences, as each person does. My diagnosis came with several. I did feel part of the diagnosis process. I had been struggling immensely in many aspects of my life and my career, and I was at the point where I was in Edmonton, and I checked into a hospital. They kept me for a day, like different perspectives, you know. Often the psych teams come at random times, they don’t really inform you why or how they’re doing it. And opinions can vacillate so extremely. You know, so someone said ‘oh, you’re just having a nervous breakdown, this is normal, this can happen.’ And they’d send me home. And I would destabilise more and come back, and they would tell me…I had one professional say ‘you are absolutely a danger to society and you need to stay for a very long time.’
And that was very confusing. Because one person, two days before, said no this is normal, the next person says you’re unstable.
So, I was formed as well. And I was formed for a month. And in that time, a lot of journey happened. I learned with the psychiatrist I was working with, he was really good at being informative, but also still dehumanising, so I had the opportunity to have my mother come and have discussions and kind of engage in conversation. But at the end of the day, I was still given a diagnosis that I was not comfortable with, and it took a long time.
In my situation, I had the opportunity in a very privileged way to access resources without a lot of financial burden myself. I went through a lot of different types of therapy. From exposure therapies, to DBT therapy, to so many different types; CBT, what have you, I have done it. And in those experiences, I can really relate to Dottie that trusting a therapist is super scary. I still struggle with it and I’m still very involved with therapy.
It gets to a point for me where I don’t know what life is anymore. I only know how to psychoanalyse and can associate well ‘this is BPD, I’m BPD,’ you know. There is no room for me to have any sense of just ‘I’m a human being with human experiences’ and I don’t trust therapists super freely, because I either feel like they under relate or over relate, and I’m learning there’s a delicate balance. There gets to a point for me, where therapy is only so useful. And there comes a time where I would rather just experience society and those relationships kind of on a grass roots level, more of a narrative direction than a clinical environment.
Though I have to say, there are so many aspects of each type of therapy that are little golden nuggets that I can take away. I do feel DBT was developed in a very obscure way and Marsha Linehan, who’s the founder of these principles adopted it from many, many places, from CBT, from Zen Buddhism, and kind of incorporated her own brand. But I feel like it is essentially a part of capitalism. You know, to have a DBT program, you must have this much and do this. In Calgary, access to free DBT is 17 months’ [wait] at least.
The program from other’s experiences has been sketchy in my perspective. I went privately and it cost me an arm and a leg. Again, I had the opportunity to have funding in that way so I was very, very, very privileged. I think that there are so many little nuggets that DBT taught me, you know, like distress tolerance, when I was so suicidal that I was pushing people away or they were just literally scared to be near me because I was so unable to regulate that. And those little things really did help.
But I think there comes a time where I’ve outgrown a lot of aspects of therapy. And I’m tired of pathologising human experience. There’s so much more and this group, this Superpowers, has really allowed me to like, let go of the need to have BPD as my identity and simply relate in a way that’s different for me. And there’s some train of thought that BPD does not actually exist. The symptoms of behaviours are still of course valid, but that it could be a form of Complex PTSD rather than this ‘personality issue,’ and I think identifying something wrong with your core foundation is really fucking harmful.
Tiffany: Mhmm I would agree.
One thing that really jumps out at me, actually about both of your stories there, is that at the beginning of these journeys there was a moment of self-awareness and an action of very active self-preservation. Both of you took an action of checking into a hospital and then were met with, like I know that the stories are different, I want to honour those differences, but there’s also a shared experience of self-awareness and cherishing your own life enough to take that action to preserve it, and then running into what sounds like in both cases, a system that then really dehumanised and diminished and didn’t acknowledge that active agency, and that choice of doing what would make your life possible. So, that’s not a question, but I just wanted to note that, because that feels important.
Kay: I never thought about that. [laughs]
I mean, I felt that and I knew it, but I hadn’t heard it, so you’re right. We did do that, and nobody said thank you for doing this, for sticking around even though it’s scary as hell. [points to Sam] Thank you. [Sam points back and says Thank you]. That was my aggressive point. [laughs]
Sam: I just wanna comment on that. As someone like, I still struggle with ideation, not so much now, but it’s still a big part of my day. And Calgary hospitals had been unrelentingly unhelpful. Being a repeat patient for issues that continue to happen. I don’t know why but I’ve been told directly from psych teams, ‘people with BPD don’t belong in hospital.’ That ‘you need to go now, you have BPD, you’re gonna get way too attached.’ I’m like ‘listen it’s been two and a half weeks, and I can’t leave my home today. It’s so bad I cannot function,’ and being told ‘well this is how we’re gonna treat you,’ and it’s gotten to a point that seeking help in those times is very, very, scary.
I write a letter and I don’t tell them anything, until I’m at a place knowing that I’m going to spend 24 hours, up to 96 hours, in an ER where nurses actively work to devalue you. You know, I feel like ERs are not supportive of things they can’t see. And that’s something we’re going to fight like hell to change, cause it can’t keep happening.
Tiffany: What do you hold onto in those moments; what keeps you connected to that sense of humanity or the part of yourself that you named as ‘human’ that was screaming yes for connection? How do you hold onto that in contexts where you know that you’re going into a hostile but necessary space?
Sam: Ahhhh [big sigh]. The will to live. I feel that in many forms of the recovery moments, I need to hold on and go through these experiences because I know this is what I need to stay safe and that one day, just maybe, there can be enough ripple effect that I can be that change. That’s all I’ve ever wanted is to make impact in the world for the better.
Tiffany: I think just speaking from myself, because we have intersected and collaborated in many spaces over many years, I certainly have been impacted by your role in my life. And I think like obviously I’m not [gestures towards the audience], but I imagine this is a very moving thing for me to hear and I imagine it might be moving for folks out there, too, so I think that that impact is happening.
One common theme is that there’s this idea that BPD renders you incapable of making your own choices and decisions, that BPD kind of like, drives the bus. That’s part of that dominant discourse. And what I hear when you talk about being the change, or making a ripple, is a strong connection to a sense of agency.
So, I guess I’m curious, are there people in your life who know that you cherish that ability to make a change?
Sam: Yeah, absolutely. My mom is a huge person who tells me quite frequently, like, if you want something, like you’re gonna go for it. And there’s been lots of different places where people see that innate agency within me. And I don’t know how it developed, I think trauma probably, enough trauma, to say like, fuck this, this is not my story. Finding support anywhere I can, whether it is the person on the street who can relate in ways that the bureaucrat cannot. I don’t know, it’s everywhere, and it’s so little, but it’s tiny shifts, tiny, tiny shifts. And I think of course recognising I’m very privileged, and so I have very different intersections than more marginialised folks and I acknowledge that today.
Tiffany: That sort of ties into the next question that I had written. Difficulty in relationships is one of the most common traits associated with BPD and yet our BPD Superpowers group has maintained such a strong focus on community and the role of cherished friends and community members and family. That came up again, and again, and again in our conversations.
So Kay, I was wondering, who in your life has been supportive in helpful ways and what have they done that’s been helpful, how has that community shown up for you?
Kay: [laughs] This is like, I can talk about myself and that’s okay. My husband, like…it makes me cry every time…ahh [big sigh], so definitely my husband, my spouse Brandon. He was there every single turn, not sometimes embracing the more dark corners that I had, but still witnessing them, and knowing that I had that agency. And I had the strength and the passion and the compass inside of me; that I was the expert. He just was there in crucial moments where I felt like I was bubbling; he just stood there and was my witness and believed that I would figure it out.
And that spoke volumes, because there was a point, kind of like, my darkest hour, I had not a single friend. I didn’t even have one. But Brandon was there. And he let me do whatever I needed to do. He never gave me guilt trips, or shamed me for the way that my mental health was presenting itself. And always generally just told me, ‘you’ve got this. I trust you with your own life.’
And that meant everything. Just having one person in my corner. I was like, I don’t have family connections, I don’t have any close friendships because it did all burn down at a point, like, you know, I was a toxic individual in all of my communities and all of a sudden every single door I thought I had was closed. And he just stuck around. And like, stuck around enough that we now go to relationship therapy and identify ways that we can communicate better, and it betters my other connections that I now have, and I value him so much. He’s like the best part of life.
Tiffany: What really jumps out at me in what you shared there, was the way you phrased, ‘not necessarily embracing but witnessing every part of you.’ I was wondering, what does it look like, or what are the actions that can be associated with not embracing, but witnessing? How does that show up in your relationship?
Kay: Well, I mean, I have a really dire relationship with most substances. To the point where I’d be pretty much drunk all the time, and it was impacting me in ways that I had no idea. And this has gone on since I was 19 years old and reached a fever pitch about 3 years ago, so the last 3 years have been the drunkest of my life, and not in a fun way. And other substances got involved, but even then, even when I told Brandon what was going on, he was still like ‘okay, fine, I can’t change things for you, and like, this is how you’re coping right now. Please, please come to me if you feel like talking about this or you feel I can help you in some way.’
And so I knew that there was no shame associated with that coping mechanism, any of my coping mechanisms, like self-harm. He [would say], ‘okay, so you’re gonna go in the bathroom and you’re gonna cut.’ We had a conversation about it. ‘What are you doing right now about that?’ And I was like, ‘I am cutting to release all of the feelings’. And so he’s like, ‘so you’re not cutting to kill?’ And I was like, ‘I am not cutting to kill.’ And he said, ‘okay, well there are little bandages and sutures in there, there’s clean razors in there, there’s alcohol in there, and can I just sit on the other side of the door?’
And I said ‘yes, thank you.’ And closed the door and did what I had to do, and felt his support through a door while I was self-harming.
So, like at that point that’s what it looked like. And then with my alcoholism and substance abuse, he let me ride that to the point of almost pure and absolute self-destruction, but still with the absolute faith and lack of judgement that I would figure it out. And I did. And every single day, he’s like, ‘I’m so proud of you, I know how hard this is, and I know it’s every day.’
Tiffany: It’s interesting because that story really runs counter to a lot of dominant narratives around both substance use and self-harm, and actually around mental health too, and the idea of enabling as a thing that can happen, a negative thing. It sounds like part of what Brandon has offered is space for you to make the choices that you are going to make without judging you for them, and helping you make them in ways that allowed you stay as safe as possible within that. That’s really powerful. I wish I had a better response to that, but it just really jumped out at me how that story of what was helpful really stands against some of the discourses that we have, that say that in order to be helpful, people need to like, not allow, or control access to, or other things like that.
[to Sam] You shared about your mom who is really meaningful to you, and I was wondering if there have been other people in your life that have supported you in helpful ways, or what has been helpful. Or if anything resonated about what Kay shared.
Sam: Oh, man. It really brought me to an emotional place with that.
Kay: Me too.
Tiffany: Me too.
Sam: Yeah, I think that the word that comes out for me is harm reduction. The idea that if people don’t have safety in like, housing or food opportunities or like, love, basic needs, that they’re probably not going to magically get better. And I think that’s really valid.
I’ve had lots of different experiences with acceptance. My family’s pretty great at like, oh, what do you want today, it’s sobriety, great, like go give ‘er, or oh, you’re in a place of using, well, we support that, and it was really confusing for a long time, cause I’d use that as justification. I’m like, everyone thinks me using is a great idea, like, even my professional team was like, okay, you’re using. And I was like, waiting for the hammer to come down and like, it didn’t happen. But in doing that it really allowed me to want change for me.
I’m quick to think, ‘what do you need, what do you want, how can I be perfect like okay don’t show BPD, don’t do it.’ And so learning that agency piece again has been really big.
I have the privilege of having someone in my life where we’ve run through the gamut of aspects of enabling codependency and I definitely think that can be a part of any relationship right? It’s such a fine line for me. I was in a very codependent relationship and that is my pattern, just to feel safe. I don’t know now if that’s just my own internal stigma and pathologising, but learning that despite my challenges, there is someone who, no matter where I’m at, might need boundaries that I don’t always like, but will be there. Someone who just silently roots for me.
Sober spaces are a big, important aspect of my life today, and I find 12 Steps helpful. Not always, but I remember how many times I [would] go out and actively use or come back and want recovery, and somebody just simply says ‘hey, glad you’re here.’ Not ‘where the fuck were you, why aren’t you…’ just ‘hey, I’m glad you’re here.’
You know, my family has showed up in lots of ways, too. No one says, ‘you’re going to the hospital again?’ They’re like ‘Okay. Do you want visitors?’ So, there are really subtle ways.
My DBT therapist also has been very good. There’s aspects of the self-harm for sure, of like, ‘okay, we have self-harmed.’ Rather than, ‘you have self-harmed. Here is the punishment.’
And I think flexible boundaries, but boundaries, are really helpful for me, so that witnessing, what Kay said, rather than controlling or enabling, is so subtle. I don’t know if I have it figured out quite yet, but seeing that I can also do that with others, cause I’m quick to enable. ‘Oh, I need you to love me, I need you, okay whatever you do, that’s great,’ like…and I’m learning through examples, that there is a space where I can witness and hold space without controlling.
Tiffany: One thing that really jumped out at me as we were talking was the idea that it allowed you to choose to change for yourself, and I’m curious how you have figured out, or what has helped you connect with the ways that you want to change? How do you figure out where you want to go?
Sam: Yeah. Meditation is a big cornerstone, so I really have to work at understanding what’s in my body, what’s in my deepest sense of self, and quieting down the stimulus that happens outside. So taking that time to really like, do bodywork and sit in emotion. For me here up [motions indicating from the neck up] my body has often been a war zone. It’s not safe, it doesn’t feel good, I don’t want to be in it, and just that slow, steady, somatic invitation, and then like, journaling, writing, like, trial and error, you know? I have unrelenting standards, and so just process and recognising…giving myself permission to be utterly, completely messy. Cause that’s human to me.
Tiffany: Mhmm. I wanna go off my script here, because I’m really curious about the idea of boundaries, and how boundaries can be set in a way that doesn’t feel controlling, but does feel… ‘good’ is such a silly word, but it’s the only word that’s coming.
So, I guess what I’m wondering is, what does it look like when someone sets a boundary that, like you said, might not feel good for you, but is a necessary part of that relationship? Are there specific actions or ways of talking about that or enacting that boundary, that are helpful or that invite you to be a part of that process, or that make it possible for you?
Sam: Yeah, I’m super sensitive to perceived rejection, absolutely. Where I really have struggled…the word ‘good’… my language shift is ‘effective’.
Where it’s really effective for me is when someone invites me. Not into the decision, but the process of the boundaries. So [something] has been violated, boundaries are very contextual things, and if something has crossed said boundary, if they invite me in and say ‘hey, you know when you called me 16 times yesterday? That crossed my boundary.’
There’s an action, there’s something that they’ve admitted that they need, there’s a vulnerability piece, and then it’s like, ‘I realise that you need support, I cannot be that support on that level. What do you think you or we could do to help you through that?’ So just issue, consequence, and follow-through as well. I like consistency a whole lot, because it helps me feel safe. So, if this continues to happen, the consequence will be I will have to set even further boundaries with you.
And that role modelling really, really invites me to know and trust that if and when I cross people’s boundaries, I know that they have enough respect and love for me that they’re gonna actually come back to me and be like, ‘okay, this has happened,’ versus like ‘you’re BPD, you’re messed up, bye!’ and that tends to be how things go.
Tiffany: It’s interesting. It makes me think of both the narrative therapy foundational principle that the person is not the problem, the problem is the problem, and the solution is not individual. And it also makes me think of Rebecca Lester saying that BPD is attenuated through relationship; that you can co-create a space that makes it possible for that to just be part of the context you’re creating together.
[To Kay] I heard you going ‘Mmm’ a few times, and I wanted to ask, what do you think about this boundary conversation? Are there ways that boundaries have shown up in your relationships that have been effective.
Kay: Well, it’s funny because like I said, I really rejected a lot of the ways that people describe BPD. So, I was like, ‘I don’t take rejection hard, I just like being considered.’
So, when you said, ‘being a part of the process of boundary setting,’ [that] is consideration, it’s valuing someone enough to involve them in the conversation about what’s going on, rather than just cancelling them outright, which can explode everything. And, I mean…[laughs] there’s…I don’t know, it’s a really confusing situation for everyone to be in, because everybody has the right to have a safe relationship, and to know their own needs and their own desires, but I feel like we also have a responsibility to each other in our intimate friendships and relationships where it’s like, ‘no you can’t just cancel me.’ Like, my heart is broken, and I still don’t know [why].
So when somebody does set that boundary, and has me be a part of the conversation, I’m yours for life. There’s trust there, instead of just confusion and pain. And that’s my number one trigger in pretty much every situation, I can trace it back to somebody not asking me how I felt or where I was at. It’s like, ‘why aren’t you considering me in this?’ And why am I not valid in this context, as a part of it, and integral part. So, yeah. [laughs]
Sam: That really spoke to me on those boundaries. Thank you.
Tiffany: It’s interesting because that idea of being invited into the process, not necessarily, I don’t think I’m hearing from either of you that being invited into the process means being in control of it or having any kind of veto power over people’s boundaries, but having the courtesy of being told what the boundaries are, that sounds really important. And there are narratives about BPD as being controlling or manipulative and unreliable and untrustworthy, and in this conversation about boundaries, it sounds like maybe some of those descriptors might not encompass the whole humanity of the people that are being described.
So the last question that I planned for us today has to do specifically with the superpowers that we’ve identified in group conversations. I was wondering, Kay, if you could speak about which of these superpowers you have a particularly close relationship with, and what that looks like for you?
The BPD superpowers that we identified were:
- The superpower of community and community care
- The superpower of showing up
- The superpower of resilience
- The superpower of endurance
- Dialectics as a superpower, meaning holding multiple true stories at once
- Superpowers of empathy and compassion
- The superpower of quick turnaround of emotions
- The superpower of being able to get out of a bad situation
- And the superpower of chameleoning and flagging. Chameleoning being the ability to blend into situations, and flagging being the ability to signal to other people parts of their identity.
Kay: Good, okay. Well, probably 75% of that list.
The things that jump out at me personally that I know I am ‘super’ at are chameleoning. It’s interesting because it is so often framed as manipulative behaviour. And oftentimes it is also thrown in with a bunch of other personality disorders I was slapped with. It’s like, ‘you’re doing this to impress people, you’re doing this to like, whatever, survive,’ and it was [framed as] a negative coping mechanism. But it’s actually a superpower, so I definitely feel that.
And that also feeds my resistance and my resilience, and I feel like we’re really good at holding on and believing that there is better and more and I definitely feel… I guess community wasn’t really one that stuck out at me, that’s not really my strong suit, but chameleoning and empathy are probably my number one.
It’s like, feeling those strong feelings.
Someone said the word trauma bonding to me the other day and I was like ‘that sounds like a negative thing like in the way that you said it with your voice and the inflection; I don’t think I like it.’ And she had to stop and be like, ‘well you know honestly, it usually is perceived to be a really bad thing, like, you’re just using your trauma to bond,’ and I was like ‘oh, but that’s what we do [laughs] and that’s how things happen and like, it happens to someone else.’ And she’s like ‘okay well maybe it’s codependent,’ so she threw a bunch of unhelpful stuff at me and I was just like ‘fuck this I’m taking back trauma bonding.’
I mean, my empathy helps me connect to people that have been in difficult situations and I’ve been like that since I was a child. And I always thought that there was something wrong with me that I could feel these things with such overwhelming reality, like sometimes it would displace my own self and it would just be me in a sea of so much human difficulty. And I would see it and I would be so overwhelmed I would shut myself off and not know what to do. I’d be frozen because my powers of empathy I had not yet learned to control. [laughs] or like, work with, I guess. So that’s where empathy is definitely the one that I really feel. All the time.
Tiffany: I have read quite a bit about trauma bonding and you’re right, it is often framed as a negative thing. And I can see how there are situations where it can introduce problems to a relationship or to people’s lives.
But like, we never talk about ‘boardgame bonding’ in the same stigmatizing terms even though any kind of relationship based entirely on shared experience can hold space for unpleasant parts of that relationship or unpreferred parts of that relationship.
[to Sam] I’m gonna ask you the same thing.
Sam: I think for me a big aspect that really resonates is just like the ability to sense people, sense emotion, and show up and care, cause I know my needs and wants around human connection are less than surface, it’s fairly deep-rooted.
And so I look for opportunities to show up for others in those ways. And in a lot of feedback that I’ve received from family and friends [they’ve said] ‘wow, you’re so genuine and caring, like I just feel so loved. You’re so thoughtful and I appreciate that’
And what Kay said is that that’s often pathologised as a ‘dependent personality’ or ‘histrionic’ or like, ‘fuck off’ [laughs] you know, like, when is being genuine a great thing and I think this superpower discussion completely hits that on the head.
I can sense, I feel like a canary in the mine quite often. Things are just starting to get like ‘oooh this is dangerous.’ I can empathise and show up and just say, ‘you know, I’m feeling stressed about that, how ‘bout you?’
I think flagging, it’s definitely a big thing. Like I flag mental illness fairly frequently, and while it’s a very tricky thing to do, and has much consequences, I think those consequences do not outweigh the benefit of just saying ‘I have mental illness’ cause that conversation is huge.
You know, I used to work in health care, and it was delicate, coming out with mental illness, or having anything that made you possibly susceptible. And I refuse to hold it in anymore. Welcome, you’re welcome. I am not an island, you are not an island. Here we are, many of us. So, that’s a big thing I try and do.
I also think that the ability to chameleon is huge.
My resilience is probably one of my strongest traits, like, you give me something that I should not have or maybe not good to survive and I will. Why? Because that’s all I know. There’s no choice not to. It’s simply this is awful thing is hard, you know. Whether it’s been medical experiences I have gone through the ringer. I don’t know how, I don’t know how I did it. And I did.
So, I think people who survive or live with marginalisation or challenges and are slapped with this diagnosis actually are far more versatile, you know? BPD is like ‘oh they can’t do this and they’ll struggle’ well fuck yeah, they will, AND where’s the part that they get through it? Where’s that part of it? So this superpower concept like, has often given more grace than three and half years of consistent therapy ever did.
Tiffany: One of the things that was identified in our conversations was the idea that folks with BPD, for a variety of reasons, often have very well-developed skills for navigating complex persistent traumatic experiences. And right now, there are a whole lot of people in the world looking at climate crisis, and rising facism and late-stage capitalism, and experiencing persistent traumatic feelings.
So I think it would actually be very interesting if we could figure out a way, and that’s one of the goals of the resource, to take some of these skills that have been developed by folks with BPD diagnoses and teach other parts of the community how to navigate big, intense, persistent negative feelings.
Because I look at my facebook page, and I think there are a lot of folks who have not really been confronted with big, persistent, negative feelings that get really overwhelming, and there are skills within, there are insider knowledge within, folks who have BPD that would be helpful for a lot of people who right now might not ever have had to navigate that experience.
The last thing I wanted to ask was whether there’s anything that either of you really wanted to talk about that I missed in my questions, or that has come up in our conversation that you wanted to circle back to, or just open up a little bit of space for either of you.
Kay: I’m good. I also love that we’re kind of wrapping it up with the future in mind because I feel like so often I feel like a lot of us don’t have… we feel like we don’t have a settling spot, we don’t have a place to feel safe, we literally don’t. Like there are very few places we can go where we know deep in our souls we’re safe.
So, like, we have our online communities, we have small discussion groups, but like, giving me even the suggestion of somebody else valuing my perspective and lived experience makes me feel good. So, I love that we ended it with that, because it’s like yeah, we are absolutely assets to society. We do deserve to be in hospital. We do deserve to tell our stories and be valued members of society, so, and I’m looking forward to that because like… I’ll never forget, my boss sat me down and was like, ‘yah, like honestly? The way you’ve been acting, like there’s no excuse for it. Everybody has things that go wrong,’ and I looked at her and I was like ‘call me when your mom dies, cause I’ll be ready.’ I still feel that way, I’m like call me, because I’ll know how to navigate that pain with you and witness you with kindness and empathy. And that kinda goes with everybody that’s gonna slowly realise that all of this shit is gonna come back to every one of us. So, we’re here and we can help! [laughs] firefighters! [laughs]
Tiffany: [to Sam]: Was there anything that you wanted to talk about that we didn’t get to or that you wanted to come back to?
Sam: I think the biggest thing that is so important, is anyone who tells you ‘you’re too sensitive’ or ‘you’re not blank…’ is just like, fuck them, number one!
Number two, I think it was really mentioned in here is challenging the bias that exists in others. Because when someone is deeply uncomfortable with who I am, it has nothing to do with me. Because it’s their own process where they are uncomfortable. They often don’t recognise their own emotional needs, and it is a deeper reflection of maybe their own stuff. And so my whole life has been ‘too much’ for others, and I’m learning, that’s theirs! I am just okay today so I just want to thank people for holding space. I just wanna like, squeeze you but I won’t, but like, thank you. Like Kay said, I’m glad that we’re focussing on the future. That’s wonderful.
Note from Tiffany: If you wanted to offer any witnessing to Kay and Sam, please email me and I will pass it along.