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
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.

Succulent zine call for contributions

Succulent zine call for contributions

Call for contributors!

After writing an update to my patreon supporters yesterday, wondering whether we could do some kind of small collective document or zine, I decided that, yes, I do want to do a little zine about how we are handling covid19.

I haven’t made a zine in a little while, and this is a pretty big issue that has lots of us worried and in our feelings. In my experience, writing and co-creating something can help us alchemize those big and overwhelming feelings into something that feels possible, into paths forward.

I love the comic about how we are basically houseplants with complicated feelings, and it got me thinking about how isolation means we need to be succulents, able to survive and thrive in conditions of scarcity and intensity, and how fear also turns out lives into deserts, and how precarity does the same.

So I thought we could use that metaphor, and make a little zine about what gets us through, and how we get each other through.

What are our skills of survival?

What are our strategies of mutual aid and collective action and care?

How are we keeping ourselves going, and what can we teach each other?

Many of us are in communities with generations-long histories of succulent lives in deserts of ableism, transantagonism, queerphobia, colonialism, white supremacy. Oppressed and targeted communities know the way forward.

If you’d like to write something about how you’re feeling about the news, the health guidelines, the government response, your own experiences of isolation as a result of disability or illness that were not accommodated and how this has given you insider insight into what gets you through… let me know!

I won’t be hosting an in-person narrative conversation about this (because social distancing is what we’re supposed to do!) but I was thinking that maybe we could host an online narrative chat about it, and turn that into part of this collective document.

Let me know if you would be interested in that, too.

Send your submissions to sostarselfcare@gmail.com. Please send your submissions by April 10, 2020.

Despite the hostile ground: collective project

Despite the hostile ground: collective project

This new project, which will become a zine or a collective document of some sort, is inspired by a community member who wanted to create a “map” of all the women and non-binary folks who have managed to live a life they want despite not having family support, and despite dealing with the fear and uncertainty that can come with acute illness and chronic pain.

This project reflects our collaborative desire to make this “map” possible – to bring together stories that will show some of the many ways forward through the compounded hardships of unsupportive family and what we might call “body problems” – illness and pain, but also the problems that can be invited into someone’s life by having a body that is deemed unacceptable in our ableist, fatphobic, transantagonistic, white supremacist culture.

We are looking at these factors together because there is often an expectation of family support in many of our cultures. When we fall on hard times, we are often advised turn to family. When we get sick, family is often expected to be there for us. Although we recognize that family is not always there, there’s still this dominant narrative that they will be, or at least that they should be. And when they aren’t, it can leave us feeling isolated, vulnerable, questioning our own value and our place in the world. Experiences of rejection, dismissal, or an absence of support can stay with us for a long time.

We are looking for stories from trans and cis women, non-binary folks, intersex folks, and trans men who have experienced an unsupportive family of origin paired with body problems, and who have continued to live a badass life despite these compounding factors.

(Although cis men also experience these compounding factors, and their experiences are valid and worth listening to, in this project we are also interested in the particular ways in which misogyny and sexism, which are experienced by anyone who is not a cis man, intersect with these experiences. If you are a cis man and want to share your story of experiencing these compounding hardships of unsupportive family and body problems, please reach out to me – I am happy to create a supplementary zine, or a section within this project! But the initial project is focused on non-men because this is an important part of the original context.)

These stories will be collected and turned into a small zine or collective document, and we hope that this resource will offer some hope for folks in this position, including the community member who inspired this project!

When we then also experience body problems, particularly body problems that impact our ability to find employment, to engage in cherished hobbies or activities, or to access social spaces and support, the lack of family support can become even more difficult to deal with. This is particularly true in contexts where the social support net is being eroded – where welfare, assisted living, disability pensions, income support, housing support, and other supports are difficult to access or not adequate to support our lives.

And yet, we know that people get through these hardships.

We know that there are disabled folks with no family support who are living rich and precious lives.

We know that there are so many people who have experienced these hardships and gone on to be successful on their own terms.

We want to collect those stories.

We want to pull those threads of hope together, and weave a safety net of stories for people who don’t yet see the way through to a life that feels possible.


You are welcome to write whatever feels right for you, and we welcome poetry, essays, art, creative non-fiction, or whatever format works for you. The length of the piece can be flexible, but ideally not more than 750-ish words.

If you would like help with the writing, get in touch with me and we can arrange an interview and I can help write up your story.

We hope to make this project available in early 2020, so please send in your contributions by mid-December.

If you would like some prompts to guide your writing, consider:

  • What does your culture tell you about how families should treat each other?
  • What had you hoped to receive in terms of support from your family?
  • What do you think that families should offer to each other?
  • What does this say about what you value in family relationships? (Care, support, being there for each other, etc.)
  • How did you learn to value this, and how have you held onto this value despite hard times?
  • Is there anyone in your life, past or present, who knows that you value this kind of supportive relationship?
  • Have you been able to find this kind of support in other relationships?
  • What have you held onto as you get through the times of feeling unsupported by family?
  • How have you navigated the body problems that have been present in your life?
  • Is there anyone in your life who has supported you in getting through these body problems?
  • What do you cherish about your life now?
  • What has made it possible for you to get to a life that you want to live?
  • Is there anything that you would want other people who are dealing with unsupportive families and body problems to know?
Pregnancy and Infant Loss Day 2019

Pregnancy and Infant Loss Day 2019

Today is Pregnancy and Infant Loss Awareness Day. This is a topic that impacts so many different people, including trans and non-binary folks who experience gender erasure and harm in both medical contexts and support spaces around this loss; Black, Indigenous, and brown people who experience racism in medical contexts and support spaces; disabled folks; neurodivergent and mad folks; so many people who go through this experience (which can take so many different forms, and can be felt in so many different ways) undersupported, underserved, dismissed.

The You Are Not Alone project was first conceived in 2017 as a response to loss resources that are highly gendered, and that implicitly assume their readers are straight, white, and cisgender. It was also created to try and provide something free and easily accessible.

This resource is freely downloadable and shareable. You can find the 70-page PDF here.

From the Introduction

This is the third edition of You Are Not Alone, and we hope to reissue this document yearly with more and better information and resources. In 2019, we have added Aditi Loveridge’s personal story, and expanded the section on handling racism in medical contexts with Aditi’s help. We have also expanded the resources section to include information about Aditi’s Calgary and online-based charity, the Pregnancy and Infant Loss Support Centre.

Although this resource attempts to be intentionally inclusive and anti-oppressive, the two primary collaborators – Tiffany Sostar and Flora – are both English-speaking white settler Canadians, with stable housing and strong social supports. Our privilege means that we are missing nuance, and we do not see what we’re not seeing. We are open to being corrected, and to hearing from people who do not see themselves represented in this document. You can reach Tiffany at sostarselfcare@gmail.com.

This document is designed to be a grief and loss resource, and we have included abortion stories and resources. However, we recognize that not every abortion is experienced as a loss or followed by grief. (This is true for miscarriages, too!) We also recognize that it is possible to feel grief without feeling regret, and this is true for any pregnancy loss, whether it’s abortion, miscarriage, stillbirth, or adoption.

We are so thankful to the individuals who contributed to this document. Our call for contributors was met with courage and generosity by people who shared their stories despite the pain that telling the story brought up for them.

We are also thankful to Andi Johnson and Randi van Wiltenburg, both full-spectrum doulas in Calgary, Alberta, who contributed not only their personal stories but also a wealth of knowledge and information. Their professional contact information is listed in the resources section.

Parents we want to honour:

  • Those who have lost a child to miscarriage
  • Those who have lost a child to abortion
  • Those who have lost a child to stillbirth
  • Those who have lost a child after birth to medical illness
  • Those who have lost a child after birth to adoption
  • Those who have lost a child after birth to structural violence

This affects:

  • People of any gender identity
  • People of any sexual orientation
  • People of any relationship status and structure
  • People of any race or culture
  • People of any state of mental or physical health
  • People of any religious belief
  • People of any socioeconomic status

This kind of work – creating resources that help serve the margins is exactly the goal of my Patreon, and it’s why I do what I do. I am thankful to be invited into this kind of work by people in the community who recognize a gap and want help filling it, which is what happened in 2017 when this resource was first created. I will continue to do this kind of work. If you would like to support me, you can find my Patreon here.

A Small Toolkit for Taking Care

A Small Toolkit for Taking Care

The Small Self-Care Toolkit was my first effort at creating a zine, and today, years later, I finished a significant update to the content and also renamed it.

So, here you go – the 28-page Small Toolkit for Taking Care (now with a stronger focus on the role of community and relationship in our actions of care).

What are actions of care?

I used to write a lot about self-care, and I defined self-care as any choice you make that honours your needs. I talked about sustainable self-care as the result of consistently bringing awareness, compassion, and intention to your choices.

I don’t really talk about self-care as much anymore, because I think that community care, collaboration, and connection are so critical to challenging the kind of individualism that places all of the responsibility for our well-being on us as individuals, and can end up being victim-blaming and hurtful.

I still think that honouring our needs is important. And I still think that it’s easier to make these actions sustainable when we bring awareness, compassion, and intention to our choices. But now I think that it is important to name and recognize how these actions of care happen within social contexts, and how we are not just looking after ourselves when we take these actions – we are also looking after our communities. And how we can also care for ourselves by caring for each other.

Download the free 28-page PDF here.

And if you appreciate these resources, consider backing my Patreon!