THE SUPERPOWERS o The Superpower of Community (and community care) o The Superpower of Showing Up o Resilience o Endurance o Dialectics as a Superpower (holding multiple true stories) o Empathy and Compassion o The Superpower of Quick Turnaround of Emotions o The Superpower of Being Able to Get Out of a Bad Situation o The Ability to ‘Chameleon’
From the document:
This document follows a conversation, facilitated by Osden Nault and Tiffany Sostar, whose goal was to center the voices of folks who identify with BPD (either diagnosed by a professional or self-claimed), and to shift the dominant narrative about Borderline Personality Disorder. This document includes quotes from participants as well as quotes from BPD folks who were not at the event itself.
This event was the result of both Osden and Tiffany noting the lack of BPD voices in the resources available about, and especially for, the BPD community. So much of what is available includes harmful stories about what kind of people have BPD, and how difficult and even dangerous it is to be in relationship with them. These stories obscure the complex lived experiences of BPD individuals who have valuable insider knowledges into how to navigate big emotions and the ongoing effects of complex trauma.
Because we live in such a complex, overwhelming, and traumatizing social context, we hope that this resource might also provide help and insight for folks who do not identify with BPD but who have experienced complex trauma or are living with overwhelming Feels.
We also hope that this resource will help folks who are facing the injustice of inaccessible mental health supports. We recognize that the BPD community faces intense stigma and is also significantly underserved by medical and mental health professionals. If you have found this resource because you haven’t found anything else, we hope that it helps. You are valid, your experiences are valid, and no matter how much you may struggle with your big feelings at times, we know that you also have skills, strategies, superpowers.
There’s so much more that we could have put into this document, and we hope to continue this work both within the BPD Superpowers group and through engagement with other folks who identify with borderline personality disorder (either through self-identification or through a formal diagnosis). Maybe there will even be a book!
Acknowledging the political climate in which we are releasing this work and the intersections of oppression and mental illness / neurodivergence.
At this moment, Black people in the USA and marginalized groups worldwide are mobilizing against white supremacist, racist, and anti-Black violent systemic oppression. We are unequivocally in support of this ongoing struggle for more just futures. In releasing this document at this time, we wish to acknowledge the compounded effects of anti-Black racism, white supremacy, colonialism, intergenerational trauma, and many more forms of violent oppression and marginalization on individual mental health and neurotypes.
An Indigenous participant has shared:
One of the first definitions of BPD I saw described it as resulting from a “genetic predisposition” and trauma. I immediately thought about my own family’s intergenerational trauma. At a point in time when we know ancestral trauma affects us to a genetic level, I wondered how the history of colonial violence plays a role in my present day neurodivergent experience.
We see the effects of violent oppression on physical and mental health, spanning generations and present today. In what Angela Davis has referred to as a “very exciting moment,” and about which she says, “I don’t know if we have ever experienced this kind of a global challenge to racism and to the consequences of slavery and colonialism,” we acknowledge that there is a great deal of ongoing work and healing to be done. We release this collective document with free access and the hope that it will aid in the future and ongoing well being of oppressed individuals and communities.
With love and solidarity, The BPD Superpowers group
The following is a slightly modified version of the text of a presentation given on August 24, 2019. The second part of this event was an interview with Kay and Sam, which will be shared next week. Both of these posts are shared in celebration of BPD Awareness Month. The image is a still from the presentation., with Kay on the left, Tiffany in the middle, and Sam on the right.
Welcome to “Recognizing BPD Superpowers”, on the topic of sharing and celebrating the hopes, skills, insider knowledges, and experiences of folks who identify with Borderline Personality Disorder, or BPD. This includes people who have claimed the label for themselves, people who have had the label applied to them, and people for whom both are true.
I want to note up front that this presentation will include references to self-harm, suicidality, and to some of the stigmatizing and pathologizing language that is often applied to folks who are identified with BPD. This has the potential to be triggering. If, at any point, you need to take a break – that is a-okay! Also, it’s a long post! Sorry!
Before we get started, I’d like to introduce you to my co-facilitators.
Kay D’Odorico is a queer, neurodivergent human of Indigenous and European descent. They advocate for Sex Workers and own and operate their own perfuming business full-time here in Mohkinstsís.
Sam is just a human pursuing her best possible self. She is passionate about her recovery, her intersections, and wishes to hold space for others while creating it for herself.
Both of these humans have been phenomenal supports and collaborators, and I’m honoured to have shared this space with them. The narrative interview with these two lovely humans, which followed this presentation, will be shared next week on this blog.
My name is Tiffany Sostar. My pronouns are they/them. I’m a narrative therapist, community organizer, editor, writer, workshop facilitator, and tarot reader – I do a bunch of different things, and they all sort of orient around engaging with stories. The stories people tell about ourselves and others, the stories we’ve been told about ourselves and others, and, especially, how we can tell our stories in ways that make us stronger. That phrase – telling our stories in ways that make us stronger – comes from Auntie Barbara Wingard, an Australian Aboriginal narrative therapist who has done profoundly meaningful work on many topics, including creating ways for Indigenous communities to grieve together in ways that are consistent with their cultures.
My own work is significantly influenced by the work of Indigenous narrative therapists and community organizers, including Auntie Barb, Tileah Drahm-Butler who is another Australian narrative therapist, and Michelle Robinson, who is a community organizer and politician here in Calgary. (You can find one of Aunty Barb’s projects, a walking history tour here, and one of Tileah’s project, a presentation on decolonizing identity stories here, and Michelle Robinson’s Patreon and podcast here.)
Colonial Violence and BPD
As a white settler who works in the field of mental health, a field that has historically been incredibly harmful to marginalized communities, including Indigenous, Black, trans, queer, two-spirit, fat, unhoused, sex working, substance using, and so many other communities who have come to professionals for help and been met with stigma and harm, I think that recognizing how much I have benefitted from the work of marginalized communities is critical. Any good work that I do in communities that are more or differently marginalized than I am myself is entirely due to the generosity and wisdom of the people within those communities who have shared their insider knowledges.
This workshop happened on Indigenous land, and this blog post is being written on Indigenous land. All land is Indigenous land. Here, I am on Treaty 7 land. It is the land of the Blackfoot Confederacy, including the Kainai, Siksika, and Piikani First Nations, and the Stoney Nakoda, including the Chiniki, Bearspaw, and Wesley First Nations, the Tsuut’ina, the Metis Nation of Alberta, Region 3, and all of the other Indigenous men, women, and two-spirit folks who are here as a result of child removals, forced relocations, economic pressures, or other reasons.
This work was inspired by Osden Nault, and we had been talking about getting this project underway for quite some time. We both noted the lack of BPD voices in resources and writing about BPD, and wanted to do something to address that. This presentation, and the resources that are currently under development, would not have happened without Osden. They also co-facilitated the first group discussion that created the foundation for this workshop. Osden is an artist of Michif and mixed European descent, whose art practice and research are both grounded in queer, feminist, and Indigenous world-views. Osden lives in Tkaronto on the traditional territory of the Haudenosaunee, Wendat, and Mississaugas of the Credit First Nations, under the Dish with One Spoon Wampum Belt Covenant, which precedes colonial treaties on this land. Even though they weren’t at this workshop, their influence was present!
This presentation was, and is, part of a larger series of resources that the BPD Superpowers group is creating around BPD, some of which will be shared during BPD Awareness Month in May of 2020. If you live in a colonial country and don’t know whose land you’re on, it would be worth looking that up. The land you’re on is now part of this project, too.
Here in Canada, the Final Report on Missing and Murdered Indigenous Women, Girls, and 2SLGBTQQIA people found that:
“The significant, persistent, and deliberate pattern of systemic racial and gendered human rights and Indigenous rights violations and abuses – perpetuated historically and maintained today by the Canadian state, designed to displace Indigenous Peoples from their land, social structures, and governance and to eradicate their existence as Nations, communities, families, and individuals – is the cause of the disappearances, murders, and violence experienced by Indigenous women, girls, and 2SLGBTQQIA people, and is genocide. This colonialism, discrimination, and genocide explains the high rates of violence against Indigenous women, girls, and 2SLGBTQQIA people.”
We must talk about colonial violence when we are talking about trauma-related mental health experiences, which many people experience BPD as being, because otherwise we risk perpetuating harm. For example, the 2014 research paper “Characteristics of borderline personality disorder in a community sample,” published in the Journal of Personality Disorders, finds that Native American and African American communities are significantly more likely to be diagnosed with BPD, and with other conditions such as depression, anxiety, etc.
I think that, knowing this, we must look at racial trauma, and acknowledge how racial trauma impacts individuals if we are going to talk about these experiences and diagnoses. Otherwise, we are missing key context.
Rebecca Lester, in her paper, “Lessons from the Borderline” writes:
“Most people diagnosed with BPD grew up in situations where their very existence as a person with independent thoughts and feelings was invalidated (Minzenberg et al., 2003). Sometimes, this entailed chronic abuse, either physical or sexual. Sometimes it was more of a grinding parental indifference. People diagnosed with BPD overwhelmingly experienced their early lives as involving constant messages that they do not – and should not – fully exist.”
How can we separate this from the findings of the Final Report, which identify exactly this dynamic of abuse and identity invalidation as having been directed at Indigenous communities since the beginning of colonization? I don’t think that we can.
What even is a “personality disorder”?!
So, borderline personality disorder, like many “personality disorders” is a contested and controversial term and diagnosis. Heads up for some stigmatizing and pathologizing language in this next section. I want to give you a bit of context for the social location of BPD, and for my own positioning here.
I have never received a diagnosis of borderline personality disorder. Although there are many BPD characteristics that I do strongly identify with, and I share an experience of trauma that many BPD folks might recognize, I do not feel a strong attachment to the BPD label. In my own life, I am comfortable recognizing certain shared experiences without claiming a shared identity.
In my own work, I do not diagnose the community members who consult with me for narrative therapy, but I do respect and work with the diagnoses that people bring into our sessions. There are lots of reasons for this, but one important one for locating myself within this work is that as a narrative therapist, I am interested in externalizing problems – meaning, locating the problem outside of the person I am consulting with. I think that many contemporary ways of speaking about borderline personality disorder invite us to view BPD as a set of traits inherent to an individual.
BPD is often described as a volatility that can make people dangerous, an instability, a lack of cohesive identity – all of these ways of speaking about BPD locate it within the person, rather than within their context. I think that this obscures the many ways in which folks who have been identified with BPD respond to the problems in their lives. These ways of speaking, of telling a story about BPD, can end up having the consequence of giving BPD more agency than the person in front of us!
And I think that this is a problem.
I also think it’s a problem that can arise even when we’re not being malicious or trying to be stigmatizing – “You can’t help it, it’s the BPD” is a framing that invites neither accountability nor dignity and agency, even though it appears to be a compassionate approach.
Instead, I am interested in how people respond when BPD shows up in their lives. I’m interested in learning when this problem first showed up, what it wants, and how people have responded to it. What are they valuing when they pick up a DBT workbook and start developing their strategies for emotional regulation? What are they hoping for when they continue to show up in relationships despite the BPD voice telling them to bail? Who taught them that they could respond? Who in their lives knows what they cherish, and would not be surprised to learn that they are taking actions to respond to the problems in their lives?
Rebecca Lester writes:
“I understand BPD somewhat differently than my clinical colleagues who see it as a dysfunction of personality and my academic colleagues who see it as a mechanism of social regulation. In my view, BPD does not reside within the individual person; a person stranded alone on a desert island cannot have BPD. Nor does it reside within diagnostic taxa; if we eliminated BPD from the DSM, people would still struggle with the cluster of issues captured in the diagnosis. Rather, BPD resides – and only resides – in relationship. BPD is a disorder of relationship, not of personality. And it is only a ‘disorder’ because it extends an entirely adaptive skill set into contexts where those skills are less adaptive and may cause a great deal of difficulty. Yet due to the contexts in which the skills were developed, the person has a great deal of trouble amending them (Linehan, 1993). Since BPD resides in relationship, BPD can also be attenuated through relationship: it is not a life-sentence, and it is not even necessarily problematic if managed constructively.”
One of the foundational beliefs of narrative therapy is that the person is not the problem, the problem is the problem, and the solution is rarely individual. I think that this is an important framing to bring to discussions of BPD.
So that’s where I stand.
Questioning the Discourse
How about the discourse around BPD?
In her fantasy book Borderline, author Mishell Baker, who identifies as BPD herself and has written a badass BPD heroine for the novel, writes, “Sometimes, the first thing people learn about borderlines is that you can’t trust them. And there’s not always much learning after that.”
That’s why it is so important to think critically about the stories we are telling about BPD, and about people who are identified with BPD. To keep learning. To interrogate what we have been taught or told about what it means to live with BPD experiences.
Does the story leave room for the dignity and agency of the person being described?
Does it position the person as the expert in their own experience?
Who does this story serve, and what are the potential outcomes of this story?
We need to ask these questions anytime we read an article, a post, a book, a webpage – what, and who, is being supported in this narrative?
What, and who, is being diminished?
Bring these questions with you anytime you engage with writing or speaking about BPD (or anything else!)
BPD is recognized as one of ten personality disorders in the DSM, The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. In the ICD-10, the manual used by the World Health Organization, this diagnosis is named “emotionally unstable personality disorder.”
The Mayo Clinic defines a personality disorder as:
“A type of mental disorder in which you have a rigid and unhealthy pattern of thinking, functioning and behaving. A person with a personality disorder has trouble perceiving and relating to situations and people. This causes significant problems and limitations in relationships, social activities, work and school.”
We’re going to come back to this idea of “trouble perceiving and relating to situations and people” because, in fact, many participants in our BPD Superpowers group identified themselves as being uniquely and specifically skilled in observing their environments, relationships, and selves, and in building community and empathizing and connecting with other people. Although it is true that many folks experience BPD as getting in the way of their relationships at times, this does not mean that they cannot perceive and understand what is happening around them.
BPD and Abuse
This framing, this story of what a personality disorder is, can be weaponized against a person who is identified with BPD. It can actually leave them more vulnerable to abuse, because it frames them as being somehow inherently and perpetually incapable of accurate perception. Even if this is not what a clinician might mean when they use this language, this is what you get from a quick google search. Very little discussion of the social contexts within which these so-called “personality disorders” arise, and almost nothing that describes the skillful and intentional ways in which people respond to these problems.
Gaslighting refers to actions that cause someone to question their own memory, perception, or sanity. Gaslighting can happen intentionally – lying about, denying, or misrepresenting what has happened.
But it can also happen unintentionally when we treat someone’s perception as unreliable, when we default to the idea that they are lying or mistaken, when we refuse to position them as the experts in their own experiences. The discourse of personality disorders as meaning that a person “has trouble perceiving situations” can create a context within which a person with BPD is being constantly, and often unintentionally and non-maliciously but still harmfully!, gaslit. It can leave people who are identified with BPD in the position of not being believed if they are subjected to abuse. It is not a helpful framing.
How are we witnessing BPD?
As an alternative framing, it might be helpful to ask ourselves what is influencing how we are witnessing the people in our lives who are identified with BPD. Are we kind witnesses to their experiences? Are we holding space for them to share their insider knowledges into what they need, what they are experiencing, and what is helpful for them?
And on the topic of helpful or unhelpful, here is what Wikipedia has to say about BPD:
“BPD is characterized by the following signs and symptoms:
Markedly disturbed sense of identity
Frantic efforts to avoid real or imagined abandonment and extreme reactions
Splitting (“black-and-white” thinking)
Impulsivity and impulsive or dangerous behaviors (e.g., spending, sex, substance abuse, reckless driving, binge eating)
Intense or uncontrollable emotional reactions that often seem disproportionate to the event or situation
Unstable and chaotic interpersonal relationships
Frequently accompanied by depression, anxiety, anger, substance abuse, or rage
The most distinguishing symptoms of BPD are marked sensitivity to rejection or criticism, and intense fear of possible abandonment. Overall, the features of BPD include unusually intense sensitivity in relationships with others, difficulty regulating emotions, and impulsivity. Other symptoms may include feeling unsure of one’s personal identity, morals, and values; having paranoid thoughts when feeling stressed; depersonalization; and, in moderate to severe cases, stress-induced breaks with reality or psychotic episodes.”
The wiki page also includes the Millon subtypes, which include Discouraged borderline, Petulant borderline, Impulsive borderline, and Self-destructive borderline. Fabulous.
So that’s Wikipedia, which is one of the first places that many folks look when they receive a diagnosis of BPD or when they are trusted with a disclosure from a friend or family member, or when they hear about someone having BPD.
If you are here as a friend, family member, or someone in community with folks who are identified with BPD, imagine what it might feel like to read that about yourself, and to have that be the dominant narrative of who you are. Imagine what it might feel like to know that people around you are reading this about you, and may be talking about you and people like you in these terms.
If you are here as a person who identifies with BPD, know that I and every one of the people involved in this project, and many people beyond this group, see you for more than these degrading and diminishing descriptors. We recognize your superpowers. We recognize your resilience. In one of the group discussions, a participant said, “Every single person with BPD who is still with us, and those that aren’t still with us, I think that we absolutely deserve to be acknowledged and that our hard work should be acknowledged. Not tokenized or pedestalized, but having that work acknowledged and witnessed.”
And I agree with Rebecca Lester when she writes:
Through challenging embedded bias, honoring the testimonies of individuals, questioning of our own motivations, and renewing a commitment to reduce injustice, silencing, and suffering, our intellectual, clinical, and human potentialities are being stretched and, if we are fortunate, will continue to grow.
What I find most compelling about my clients with ‘borderline’ symptoms is that they are still struggling to exist despite the deep conviction that they do not deserve to do so. And they are still struggling to connect with others, despite being told again and again that they are manipulative and controlling and difficult. Far from being inauthentic, then, these individuals are reaching out into the world in the most honest, direct, vulnerable ways they possibly can, all the while bracing for the invalidation and hostility that they know is likely to follow. They cannot help but reach for connection, and to hold out faith, however dim, that they will find it. I find this incredibly inspiring; it puts front-and-center the impulse for growth and health that I believe exists in all of us, no matter how encrusted with despair, dysfunction, hopelessness, or defeat.
I learn from these clients every single day. Their struggles and their resilience humble me. They remind me that intellectual critique is but one piece of a much larger puzzle, and that they have experiences that deserve to be heard and validated, even when (perhaps especially when) they challenge our interpretations. They push me to become a better scholar, a better clinician, and, I hope, in the end, a better human being.
One of the contributors to the BPD Superpowers project, Dottie Ayala, shared the following on her facebook page and has given us permission to use this quote in the resource.
with my bpd symptoms, I just can’t handle cbt or dbt thanks to fucked up experiences in the past. And I don’t trust any therapists bc they’re only getting my POV about what’s happening and I think they side with me more than is valid sometimes. And also trusting someone else’s judgement more than my own is so damaging as an abuse survivor.
but I notice my reactions getting less and less severe over the years and that’s just like a combination of introspection, community, and also others holding me accountable. Plus realizing I have bpd helped me be able to recognize when I’m having a flare and prepare accordingly.
basically, mental health care can look really different for different ppl. I feel like my doctors act like I’m resisting treatment when really I’m just resisting being harmed more.
Dottie Ayala, Facebook post
Difficulty in relationships is one of the most common traits associated with BPD, and yet our group has maintained such a strong focus on community and the role of cherished friends and community members. This group, and so many folks identified with BPD beyond this group, prove how thin and simplistic are the dominant narratives of BPD.
I’m going to end with the list of superpowers that were identified in our group conversations. These superpowers will be explored more fully in the collective document, which I hope to have ready to share by the end of this month!
The Superpower of Community (and community care)
The Superpower of Showing Up
Dialectics as a Superpower (holding multiple true stories)
Empathy and Compassion
The Superpower of Quick Turnaround of Emotions
The Superpower of Being Able to Get Out of a Bad Situation
The Ability to ‘Chameleon’
Check back next week for the next BPD Awareness Month post, which will be the video and transcript of the interview with Kay and Sam.
Image description: A colorized hallway in what might be a hospital. Text reads: Madness, Violence, and the Patriarchy (or, When My Favorite South Park Episode Changed from “Reverse Cowgirl” to “Breast Cancer Show Ever”) guest post by Emma McMurphy
This is a guest post by Emma McMurphy. Emma is a Mad Pride activist, a movement that celebrates and finds value in the states, traits, and characteristics typically categorized as mental illness. She is passionate about providing and teaching non-coercive, context-informed approaches to suicide prevention and mental health crisis. Emma blogs about Mad culture and disability justice at www.radicalabolitionist.org.
This post is part of the Feminism from the Margins series.
Content note on this post for discussion of self-harm, suicidality, involuntary psychiatric institutionalization
My Mad Pride activism began as a civil libertarian cause. I firmly believed that every individual deserved the inalienable right to bodily autonomy – full control over what to do with their own bodies and minds. I knew from day one of my activism that universal bodily autonomy meant bodily autonomy for individuals designated as Mad or mentally ill – those who were hearing voices, who were suicidal, who wanted to cut, burn, or injure themselves, etc. “Give me liberty or give me death” became a favorite quote of mine, and “People should have the right to do whatever they want as long as they are not violating another person’s bodily autonomy” became a line I often repeated.
A few days after I was involuntarily committed to a psychiatric ward after expressing passive suicidal thoughts, a group of my friends happened to be watching an episode of South Park entitled “Reverse Cowgirl.” In the episode, the South Park police department enforces a strict requirement of wearing seatbelts while using the bathroom after a character dies by almost falling into the toilet. The episode resonated so deeply with me that I was almost in tears. This, to me, is what being involuntarily committed had felt like: a profound invasion and intrusion upon my body, personhood, and dignity, a violent assault upon my autonomy, all in the name of public safety and security – all when I had not done anything to violate anyone else’s bodily autonomy.
It was shortly after my involuntary commitment that I launched my activism career. The central focus of my activism was the rejection of involuntary commitment for those who had not harmed or threatened to harm any other person’s bodily autonomy. Like many feminist efforts, my activism revolved around the personal liberties and rights of Mad people. Along with my efforts came my striving to promote the message that Mad people are not usually violent or abusive – that being a danger to oneself and a danger to others should not be conflated. “People diagnosed with mental illness are much more likely to be victims than perpetrators of violence,” I would often say.
At that point the line felt clear. I was innocent. A victim. I hadn’t done anything wrong and yet I had been locked up, strip searched, forcibly drugged, and restrained.
But life happened and things got more nebulous. My fiancé came home one day and said he wanted to break up, and I sliced my arm, threatening suicide if he left. Suddenly I was no longer an innocent victim quietly expressing passively suicidal thoughts in an emergency room. I was a full blown crazy woman, using tears, manipulation, self-harm, and suicide threats to keep my partner in our relationship. While I hadn’t violated my fiancé’s bodily autonomy, I had certainly made the shift from “harm to self” to “harm to others.”
The events caused me to carefully re-examine my activism. So many of my arguments had hinged on the notion that madness is not inherently harmful to others, that individuals should have the right to experience and engage in madness that does not hurt other people. But here I was, Mad as hell, terrified of abandonment, engaging in actions that would be considered abusive or even violent by most. Who had I become? Was I one of the violent, dangerous Mad people I had so frequently otherized? “Those Mads” – the ones who deserved to be locked up, separated from society, forcibly drugged even? Was I not even Mad – just bad? Just plain abusive?
A few months later, I found myself rewatching Gone Girl, a film I’d hated when it first came out. What a stereotyping, misogynistic film, I had thought! It makes all women, and especially Mad women, look violent. For context, the film is about a woman named Amy who frames her husband for murder after he cheats on her with a younger, hotter woman. In many ways, Amy is the classic and stereotypical portrayal of the Madwoman: she is manipulative, jealous, possessive, violent, and does everything she can to ensure her husband will never leave her. “When I tell people I’m Mad, they’re going to think I’m violent and manipulative just like Amy,” I had thought.
This time, I felt completely differently about the film. All of the sudden, I could relate to Amy. When she delivered Gone Girl’s “Cool Girl” monologue, a lightbulb went off. I got it.
Below is the famous “Cool Girl” monologue:
“Nick never loved me. He loved a girl who doesn’t exist. A girl I was pretending to be. The Cool Girl. Men always use that as the defining compliment, right? She’s a cool girl. Being Cool Girl means I am a hot, brilliant, funny woman who adores football, poker and dirty jokes, who plays videogames and chugs beer, loves threesomes and anal sex and jams chilidogs into my mouth like I’m hosting the world’s biggest culinary gang-bang–while remaining a size 2, because cool girls are above all hot. Hot and understanding. Cool girls never get angry at their men, they only smile in a chagrined, loving manner. Go ahead! Shit on me, I don’t mind, I’m the cool girl.
I waited patiently-years-for the pendulum to swing the other way, for men to start reading Jane Austen, organize scrapbook parties and make out with each other while we leer. And then we’d say, yeah, he’s a cool guy. Instead, women across the nation colluded in our degradation! Pretty soon every girl was Cool Girl, and if you weren’t, then there was something wrong with you.
But it’s tempting, to be Cool Girl. For someone like me, who likes to win, it’s tempting to be the girl every guy wants. When I met Nick I knew that’s what he wanted. For him, I was willing to try. I couldn’t have been Cool Girl with anyone else. I wouldn’t have wanted to. Nick teased things out in me I didn’t know existed: A lightness, a humor, an ease. And I made him smarter, sharper. I forced him to rise to my level. I was happier for those few years, pretending to be someone else, than I ever have been before or after.
But then it had to stop, because it wasn’t me! I hated Nick for being surprised when I became me. He couldn’t believe I didn’t love wax-stripping my pussy raw and blowing him on request. That my fantasy baseball team was not a labor of love. It had to stop. Committing to Nick, feeling safe with Nick, being happy with Nick, made me realize that there was a Real Amy in there, and she was so much better, more interesting and complicated and challenging, than Cool Girl. But Nick wanted Cool Girl anyway. Can you imagine, finally showing your true self to your soulmate, and having him not like you?”
The “Cool Girl” monologue describes many of the insidious, subtle, overlooked forms of violence that the patriarchy has subjected people to for decades. It lists all of the ways that women are quietly coerced to conform to patriarchal standards of beauty and femininity to be loved and valued: maintaining thinness, engaging in unwanted sexual experiences, feigning interest in hobbies and interests that are constructed as masculine, and performing a sense of nonchalance and detachment toward romantic relationships. These are violences that affect us all but that are felt differentially and responded to differentially by people. While Amy is a white, thin, relatively privileged woman, it is often the most marginalized groups of women – women of color, queer women, neurodivergent women, trans women, and fat women – who experience the highest degree of pressure to make drastic alterations to their bodyminds in order to conform to these standards. For the most marginalized groups, these violences may result in coercion to disguise or kill off entire parts of one’s identity; failure to do so may result in more explicit forms of violence such as hate crimes, sexual violence, intimate partner violence, or police brutality.
It was at this moment that it struck me that Amy was describing violence in the “Cool Girl” monologue. Being coerced to make painful, humiliating alterations to one’s bodymind in order to be valued is violence. “Nick Dunne took my pride and my dignity and my hope and my money. He took and took from me until I no longer existed,” Amy says. In some ways, it is murder.
But the patriarchy is hardly ever recognized as violent or murderous. Instead, it is seen as the norm, as acceptable. So Amy seeks to change that. She frames her husband for murder. She stages a violent, manipulative, crazy rebellion to the patriarchy. What other option did she have?
I had also attempted to be the “Cool Girl” in my relationship with my (now ex) fiancé. I had worked 80 hour weeks to perform capitalist ideals of success that he so admired, while still making sure to have enough time to spend with him every day. I had maintained thinness, forced myself to engage in strenuous exercise, participated in sexual acts I found degrading. I had given up real, important parts of myself – my Mad Pride, my Autistic identity, my outward disabledness. And here I was, being told that still wasn’t good enough. I had given up so much, and I was being pushed beyond a limit.
Slowly but surely, I started to get radicalized. I started to learn more about the systemic factors impacting not only suicide and self-harm but also violence. I began to think about the role that powerlessness and systemic devaluation play in driving people to extremes. I started to think about the ways people might feel trapped in situations and dynamics, and how sometimes they might see violence as the only or most feasible way to regain control or escape.
I still see Mad Pride partially as a civil libertarian movement. My belief that every person deserves bodily autonomy, including those who are hearing voices and those who are suicidal, has not changed. But Mad Pride is about so much more than that. I see it as a movement fundamentally about pain, and largely about the pain inflicted by systemic and structural forms of violence. I believe Mad Pride is about recognizing the validity and legitimacy of people’s reactions to this pain.
Like my earlier version of Mad Pride, I believe that feminism often attempts to distance itself from stereotypes. Many feminists have worked to reject the notion that women are more emotional, manipulative, hysterical, or crazy. They have fought to defend the fact that women are just as rational, intelligent, and sane as men. I recently saw a book entitled, “Strong is the New Pretty.” This echoes a sentiment I have often heard in feminist circles: women are not weak like men think we are. We are strong enough to rise above our impulses, to maintain a cool rationality and sense of logic, and to exercise our bodies to meet standards of physical able-bodiedness and athleticism. Of course, I am very grateful for these feminist efforts and lines of thinking; stereotypes are harmful to everyone.
However, I often wonder if, in working to reject these stereotypes, feminists disavow madness – particularly reactions to the patriarchy that may involve violence, manipulation, and strong emotions. What if sometimes our response to the patriarchy – to all of the violence that has been committed against us for thousands of years – involves being weak, being emotional, giving into our impulses to scream, to shout, to self-injure, to threaten suicide, to exact revenge? Is there space for this within feminism? Is there space to at least acknowledge the validity and legitimacy of these responses, even if they aren’t always the most ethically correct or appropriate course of action?
A few weeks ago, I watched the episode of South Park entitled “Breast Cancer Show Ever.” In the episode, Eric Cartman ruthlessly mocks Wendy Testaburger’s presentation on breast cancer awareness, with other students and teachers doing little to stop him. When Wendy threatens to fight him physically to stop him, she is disciplined by her parents. Cartman’s verbal abuse continues, and finally, the school principal, a woman, encourages Wendy to fight him physically. Explaining that she is a breast cancer survivor herself, the principal tells her that “cancer does not play by the rules” and that since cancer will not stop of its own volition, it is sometimes necessary to resort to extreme measures to defeat it.
The patriarchy will not stop of its own volition. It is relentless, demanding, and abusive, and although it does not always result in overt attacks of life-threatening or bodily autonomy-threatening force, it is violent and coercive, emotionally and psychologically. It is extreme, though it is not recognized as such. Sometimes such extremity merits extreme responses. Perhaps madness and particularly Mad women are sometimes violent, and perhaps that is exactly what is needed.
Instead of shaming women for having extreme responses to the extremity and violence of patriarchy, I believe that it is important to engage in practices of community care and accountability that seek to explore what overlooked kinds of violence may have led to these responses. I do not have an answer as to how survivors of trauma and ongoing structural violence can best be held accountable to their responses that may include violence or harm. However, I think it is critical that we begin by taking a closer look at what we define as violence or harm and what we define as acceptable or typical, and what types of actions do or do not merit an accountability process. As our justice system currently stands, a great deal of retribution is carried out against individuals who have committed violence or harm; almost no efforts are made to address systemic or structural violence. Similarly, physical violence – breaking the skin – is seen as the ultimate, most severe and punishable form of violence, while the pervasive psychological and emotional violence that coerces people to make alterations to their own bodyminds remains unaddressed. How can we begin to shift this dynamic? How can we create a system that focuses on addressing systemic and structural violence while still allowing for individual accountability?
This post is part of the year-long Feminism from the Margins series that Dulcinea Lapis and Tiffany Sostar will be curating, in challenge to and dissatisfaction with International Women’s Day. To quote Dulcinea, “Fuck this grim caterwauling celebration of mediocre white femininity.” Every month, on (approximately) the 8th, we’ll post something. If you are trans, Black or Indigenous, a person of colour, disabled, fat, poor, a sex worker, or any of the other host of identities excluded from International Women’s Day, and you would like to contribute to this project, let us know!
Tiffany Sostar is a narrative therapist and workshop facilitator in Calgary, Alberta. You can work with them in person or via Skype. They specialize in supporting queer, trans, polyamorous, disabled, and trauma-enhanced communities and individuals, and they are also available for businesses and organizations who want to become more inclusive. Email to get in touch!
Image description: A notecard hanging from a string. Text reads: Do you like me?
(This is an edited and expanded version of a post that was shared with my patrons one week early. If you’d like early access to my posts, and the ability to suggest changes or make comments before they go up on my blog, consider backing my Patreon!)
On April 9, 2018, I wrote to Jonathan, who has been a patron since the beginning of the project (and a partner for 10 years!), “Your birthday is coming! What do you want me to write about this year?”
He wrote back almost immediately, “Caring what others think.”
I like decisiveness.
And I like this topic.
Just to expand on the topic…
The shame I feel over caring what other people think is difficult to navigate. When I was a kid I was told, over and over again, that I was just supposed to be myself and not care what other people think.
That sentiment really oversimplifies things. On the one hand, I get it. Caring too much about what other people think can really paralyze you. It gives other people a lot of power over you. It creates a lot of pressure, sometimes, to do things that you wouldn’t otherwise do. It stunts your ability to develop your own ideas, your own interests and your own destiny.
Caring what others think is seen as a sign of weakness. It means you don’t have your own personality; you’re two-faced; you lack principle and your own moral compass. We don’t trust people who care what other people think because we think of those people as fake. Caring what others think “too much” can be inaccurately pathologized as mental disorders such as paranoia, bi-polar and attention seeking disorders.
On the other hand, all of the non-vocal messaging you get is that it’s actually really, really important to worry about what other people think. Your social networks depend on what other people think about you. Your job depends on what other people think about you. Your ability to access resources depends on what other’s think of you.
It’s a cruel myth that only the weak care what other’s think. Corporations literally invest billions in controlling what other people think about them. Politicians direct a considerable amount of their power and capital towards carefully curating their public image. Many of our public institutions operate entirely based on people’s impression of the institution.
Clearly, it’s important to carefully balance the stock you place in what other’s think and your own self-confidence and commitment to be “true to yourself” despite social pressure. It’s complicated.
I’m out of balance over it. Caring what other’s think causes me anxiety. When I feel like someone is upset or angry with me I fixate on that. When I feel like someone thinks poorly of me or has a negative impression of my skill set it completely eats away at me. It makes conflict resolution very difficult for me to manage sometimes. It also means that I sometimes have a hard time being honest and authentic not only with the people around me but also with myself. I’m struggling to find a way to bring that into balance. I think, over the years, I’ve developed real strengths because of my obsession with what other’s think. I’m very keen to non-verbal communication and a pretty empathetic person. I’ve learned a lot about social cues and can pick out social patterns better than most. Meeting expectations is important to me and, when I have proper balance in my life, I’m pretty good at exceeding expectations because I care what other people think. I think my compassion also stems from caring and that’s not something I care to lose.
So, I think the concept of caring what others think is one that could really benefit from some exploration. It’s one of those deceptively simple ideas that actually has a lot of layers and a lot of depth to it.
After this post was suggested, this topic kept coming up. And it kept coming up in ways that really supported Jonathan’s insight into the way this idea “has a lot of layers and a lot of depth to it.”
It showed up in narrative therapy sessions, where one of my community members identified “caring what others think” as something that is both a cherished characteristic that allows them to bring empathy and compassion into their relationships, and also something that keeps them from acting on their own desires and needs.
Then it showed up in that same way for another community member. They care a lot about what other people think of them, and it’s both something they value in themselves and also something that they experience as a block or obstacle when trying to care for their own needs.
Then it showed up in a similar was for a third community member, who also talked about this particular experience in work contexts, where caring about what coworkers think is a skill that keeps them from oversharing and allows them to maintain boundaries, but also has them feeling isolated sometimes.
This idea of “caring what others think” became the basis of the “too much of a good thing” project that I’m undertaking as part of my master of narrative therapy and community work program (Note: I am still looking for participants for the project, so if it sounds interesting to you, get in touch!) Because the idea was growing so much, it seemed impossible to come back to this original writing prompt. I felt that I needed to get the whole project done in order to present something worthwhile.
(Sounds a bit like I’m caring about what others think of my writing, right? This shows up frequently for me, and it means I generally publish work that I’m proud of, and I don’t share nearly as much as I would like to. For the next while, I’m working on challenging this urge towards perfection and I’ll be sharing things that are a little less intensely edited. We’ll see how it goes!)
In May, this idea of “caring what others think” showed up in my own life in a big way when I was suddenly thrown headfirst into a situation where “what people think about me” became something I had to care about intensely. I was feeling (and being) observed and critiqued in personal and impactful ways. Writing about this topic felt more and more impossible.
It was everywhere! Overwhelming!
I decided to come back to this post, even though the “too much of a good thing” project is still underway, because “caring what others think” seems critical on its own. Although this topic fits within a larger framework, it deserves its own examination and exploration. As Jonathan pointed out, “it’s a cruel myth that only the weak care what other people think.” But that myth is everywhere. It’s one that impacts most of us in one way or another.
Ask the Internet
If you google “caring what other people think,” you’re likely to get a whole bunch of results with instructions for how to stop, and often with language that pathologizes or shames people who do care what other people think.
In one post on Psychology Today, the author writes, “One of our more enduring social fallacies is the idea that what others think of us actually matters. While this notion clearly has primal evolutionary roots, its shift from survival instinct to social imperative has become one of our greatest obstacles to self-acceptance.”
I have questions about this.
Is it a fallacy that what others think of us actually matters?
What my boss thinks of me matters to my employment.
It matters what the community members who consult with me think of me. It impacts my efficacy as a narrative therapist. Some research suggests that the best indicator of success in the therapeutic relationship is the “therapeutic alliance” (meaning the positive relationship between the therapist and the person consulting them). One review of the literature found that multiple studies “indicated that the quality of the alliance was more predictive of positive outcome than the type of intervention.” If that’s the case, it matters a whole lot to my work as a narrative therapist what people think!
I also wonder about the “primal evolutionary roots” of caring what people think. I am skeptical of most evolutionary psychology, given its many problems. (For one view on these problems, this problematically hetero- and cisnormative Scientific American article is a good place to start.) I particularly question this “primal” nature of the issue given the very contemporary context within which so many of us do care what others think.
For marginalized individuals especially, caring what people think can keep us alive. Caring what others think means knowing, deeply and intimately, what the dominant expectations are so that we can do our best to adapt to them.
For neurodivergent folks on the autism spectrum, caring what others think is part of the training – look at the language used in the popular Social Thinking program. (Content note on this link at the Social Thinking site for unsettling language about autistic kids. If you just want to read critiques, many of them by autistic writers, this facebook thread is full of information, but also upsetting to read.) “Expected” and “unexpected” behaviours, where “unexpected” means that the child hasn’t responded to the “hidden rule” and could be making people “uncomfortable.” Talk about teaching kids to care what others think!
On a more positive note, caring what other people thinks can foster a sense of being “accountable to the whole,” to quote my friend and mentor Stasha. This accountability to the whole means that we maintain an awareness of how our actions impact each other, and when Stasha made this comment I wondered whether a more intentional and compassionate relationship with the idea of caring what people think might be one way to challenge the individualism and isolation that our current capitalist context enforces.
Another article, this time from Lifehack, quotes Lao Tzu, “Care about what other people think and you will always be their prisoner” and concludes, “Once you give up catering to other people’s opinion and thoughts, you will find out who you truly are, and that freedom will be like taking a breath for the first time.”
Again, I have questions.
The Socially Constructed Self
Is “who I truly am” really something that happens entirely in isolation, entirely internal and apart from other people and what they think? I don’t think that it is.
I brought this question to one of the narrative therapy groups I’m part of, and I was very worried about what the group would think of me. I wrote, “This is an absolutely ridiculous question because I feel like I have read *at least* seven different version of this idea, but I’ve been searching and failing, so, halp?! I am looking for a good, comprehensive-ish, ideally readable-by-non-academic-audiences (but I’ll take an academic article also) resource on the idea of the self being shaped by context and relationships.”
I felt ashamed of the fact that I needed help, but the responses that I got were incredibly validating!
One person commented to say they were following, and I said, “You have no idea how relieving it is to realize I’m not alone in this.” They replied, “I think one of the most dangerous things a therapist can do is let their ego in the way of asking questions – well, that’s what I tell myself as I manage my “imposter syndrome” ?”
Someone else said, “So glad you asked!! I need just the thing and didn’t think of asking here!”
So many of us caring so much what each other would think, and finding solidarity and companionship in realizing that we’re not alone in it. Although the way that anticipatory shame keeps us silent is a problem, I think that the shared experience is valuable. And normal. In that group, we are all either practicing therapists or students of narrative therapy or both, and we still care deeply about what other people will think of us. We can respond to the ways in which this caring becomes a problem without demanding that we suddenly cease caring entirely. And without accepting that we are somehow incomplete because of it!
One of the responses was from someone linking me to this resource by Ken Gergen.
Gergen’s “Orienting Principles” are here (from the link – I highly recommend following the link and listening to his talk!):
We live in world of meaning. We understand and value the world and ourselves in ways that emerge from our personal history and shared culture.
Worlds of meaning are intimately related to action. We act largely in terms of what we interpret to be real, rational, satisfying, and good. Without meaning there would be little worth doing.
Worlds of meaning are constructed within relationships. What we take to be real and rational is given birth in relationships. Without relationship there would be little of meaning.
New worlds of meaning are possible. We are not possessed or determined by the past. We may abandon or dissolve dysfunctional ways of life, and together create alternatives.
To sustain what is valuable, or to create new futures, requires participation in relationships. If we damage or destroy relations, we lose the capacity to sustain a way of life, and to create new futures.
When worlds of meaning intersect, creative outcomes may occur. New forms of relating, new realities, and new possibilities may all emerge.
When worlds of meaning conflict, they may lead to alienation and aggression, thus undermining relations and their creative potential.
Through creative care for relationships, the destructive potentials of conflict ma be reduced, or transformed.
Two things jump out at me particularly: that worlds of meaning are created within relationships (which I take as a direct contradiction of the idea that we “find out who we truly are” only outside of relationship and others influence), and that together we can create alternatives.
On a similar note, I also have questions about why freedom is so individualized, if there is so much creative potential in relationships.
Of course, these articles that advise us on how to stop caring what others think of us aren’t suggesting that people shouldn’t have relationships, and treating them as if they are would be setting up a straw man that isn’t there. However, I think that there is an individualist discourse present in these articles that suggests that we can have relationships without caring what the people in our relationships think of us, and I think that discourse invites a lack of accountability and collaboration, and suggests that there is a core self that exists apart from the self within relationships. I disagree with this idea.
Melanie Grier, another wise friend, said:
I think a good question to always ask yourself is *whose* approval you are seeking and how it serves you. I’ve been thinking about this as I’ve returned to school and have been working to let go of the desire for approval from my parents, understanding that as a practically impossible pursuit.
It feels good to be liked… and I think if that is your motive, just to be liked for the dopamine rush it provides, it can cause an issues once your self-worth can easily become interconnected with the external experience completely independent of you.
But the desire for approval from valued mentors, friends, partners, peers can serve us differently – it can help us build functional, healthy relationships where both parties are mutually invested in behaving in a way that results in approval or liking. It holds us accountable in a way, wanting to do right by a person. And I think we often grow by keeping expectations of each other reasonable. Working to feel validated, if consciously motivated, can help us do awesome things, I believe…
I find even knowing that people dislike me helps me self-reflect. It can again clarify values, sometimes discovering where you’re not willing to budge.
A lot of this resonates for me, because there are many elements of society that will never like or approve of me, because I am non-binary, I am bisexual, I am polyamorous, I am AFAB and often am read as femme. When I care what these people think of me (in the sense of wanting them to like or approve of me), I am caught in an impossible trap because the only way to gain that approval is to change who I am. However, even there I do care what they think because what they think points to systemic and structural injustices. I care what they think because I want to change the social context within which those thoughts of transantagonism, heterosexism, femmephobia, and all the rest (as well as all the injustices that I don’t face as a white settler with thin privilege, English language privilege, educational privilege, etc.)
Melanie also said, “I think we are too interconnected as a species and biosphere to be an island. We impact each other too much.”
In yet another article, Tinybuddha suggests that, “Worrying about what other people think about you is a key indicator that you do not feel whole without the approval of others,” and, “When you are truly content with who you are, you stop being concerned with whether or not other people like you.”
The same types of questions come up.
Why does caring about the approval of others mean I don’t “feel whole”? Why can’t I “feel whole” while also caring about approval? Why is the approval of others automatically dismissed, when it is critical to having consensual and mutual relationships? What is active consent, other than enthusiastically and intentionally caring about getting the approval of the person you’re interacting with before taking an action?
This connects to Melanie’s points about whose approval we’re seeking, and to the idea of certain types of approval being entirely unavailable. Social isolation is recognized as a source of pain and distress, and social isolation is tied directly to what people think of us (whether we are likeable, friendable, loveable). And yet, the idea that we shouldn’t care what people think seems to greatly privilege individualism – being ourselves, being okay with being ourselves, even if that means being by ourselves.
My questions in writing this post kept coming back to why we valorize individualization. Why is it better to be an island? Why do we even believe we can be islands?! Isn’t there a whole song about how that doesn’t really work out? Sure, it may be true that the rock feels no pain, and the island never cries, and maybe that’s what we are hoping for when we distance ourselves from caring what others think. But that’s not the life that I want for myself.
Melissa Day points out that this valuing of individualization only happens within certain contexts. She writes:
[W]e fetishise individualism only within certain prescribed boundaries. Think of the hipster – I was into that before it was cool. Okay, great, you’re an individual. But someone who’s into completely different music/food/subjects and isn’t doing it to be “cool” or doesn’t have those become popular isn’t looked on as a heroic individual, but rather a weirdo or a freak (and yes, those words hurt and were chosen specifically). The sense I get is that there are two types of “don’t care what others think.” 1. They feel secure enough that who they are or what they like falls in society’s norms that they can be individual but still part of the whole 2. They like what they like and it falls so far outside society’s norms that caring about what others think really isn’t an option. This is written from the perspective of someone who had two choices growing up – change who you are and conform or stop caring about other people, be yourself, and take the lumps that followed.
I think… that it ties into this idea of everyone is special and unique. I would think the end goal of being different comes from a place of “If I am the same as everyone else, I will not be Special and Special is good.”
We are, collectively, put into a complex conundrum – we must care what other people think, and we must fit in, but we must do it in exactly the right way or we risk deviating too far from the norm and being punished for it.
As NoirLuna points out, “I feel like life would be way easier if blending in had been one of my options, but I figured out young it wasn’t, and managed to stop trying. (Which was for the good.)”
Wanting to Be Liked
Why is it a problem to care whether or not people like me?
I want my friends, my family, my lovers, my companions on this journey- I want them to like me!
I want them to like me because I know that I tend to spend time with people that I like. I am invested in relationships with people that I like. And I assume that other people are, if not exactly like me, then at least a little bit like me. So if my friends like me, they’ll want to spend time with me. They’ll want to be close to me. And I am invested in that outcome.
I have found that people are more likely to spend time with me when they like me.
And the reverse is also true. I have found that I don’t enjoy spending time with people that I don’t like, and I don’t enjoy spending time with people who don’t like me!
But then again…
There is a way of caring about what others think that can invite trouble. As Jonathan writes, “I’m out of balance over it. Caring what other’s think causes me anxiety. When I feel like someone is upset or angry with me I fixate on that. When I feel like someone thinks poorly of me or has a negative impression of my skill set it completely eats away at me. It makes conflict resolution very difficult for me to manage sometimes. It also means that I sometimes have a hard time being honest and authentic not only with the people around me but also with myself.”
Many folks can relate to that.
This topic has been challenging to write about because I, too, care “too much” about what other people think. I want people to like me. I want people to think that I am a good and worthy person. I want people to think that I am competent and capable.
The problem, as I have come to understand it in the process of sitting with this prompt, is not necessarily in caring what others think (I think I’ve been clear that I don’t consider that a problem!) but rather, when I create a totalizing narrative of myself based on what other people think. What I mean by that is, if I can only be “a good person” when everyone else agrees that I am so, that’s a problem. It’s a problem because no person is good all the time, no person can be.
Similarly, if I want to be a “worthy person” and I can only perceive myself to be that when everyone thinks I am, that’s a problem!
The problem, in my mind, is when there is only room for a single story of the self. When that story is the one told by someone else’s opinion of us (including their opinion that we can only be “whole”, or “free”, or “authentic” when we don’t care what others think), it invites so much shame to the table. It invites us into so many feelings of personal failure. We need many stories of ourselves – stories of being good and stories of being less good, stories of being liked and stories of being less liked, stories of success and stories of growth. It is okay to care what other people think. It is okay to be conflicted about caring what other people think. It is okay to actively reject what other people think. There’s space. We need that space.
I struggled with this topic because, as much as I reject the idea that caring what other people think means I am somehow “not authentic” or “not whole” or “not free”, I have internalized the idea that I shouldn’t care what other people think. That it “isn’t any of my business” and that “the only thing I can control is myself.”
But this framing grates.
It feels wrong.
It feels far too individualizing.
Of course I care what people think of me! And so do the community members who consult me, and so does the patron who requested this topic, and so might you.
The idea that we should be fully autonomous, insulated individuals, small islands of personhood operating on our own, without caring or being moved by other people’s opinions… I think that’s a really harmful and hurtful idea.
That doesn’t mean that I am governed by other people’s thoughts, or that I am responsible for their thoughts, or that I am incomplete because I care about their thoughts. It means that, as Ken Gergen outlines, my reality (my worlds of meaning) is created through collaboration and context. When I engage meaningfully and intentionally with the people around me, including what they think of me and my actions, a lot of good in my life is made possible by this caring.
Image description: Kate’s incredibly stylish orange cane, leaning against white drawers with silver handles, on a wooden floor.
This is a Patreon reward post for Kate, and was available to patrons last week. Patreon supporters at the $10/month level get a self-care post on the topic of their choice during their birthday month. These supporters make my work possible! Especially as I head into my Master of Narrative Therapy and Community Work program, my patrons ensure that I can keep producing resources and self-care content. (And wow, there are some really great resources in production! Check back tomorrow for a post about that!)
Kate and I have known each other for a few years, and got to know each other while we were both going through some challenging times (though we didn’t actually meet in person until quite a bit later, and still aren’t able to spend as much time together as either of us might like!)
Kate has been one of my most outspoken supporters, and I appreciate how she is always willing to leap in with an offer of help or a suggested solution.
Her birthday is in January, and her topic is, “maintaining intimate relationships and partnerships with a chronic illness or chronic pain.”
I struggled with writing this post because I am experiencing my own spoon shortage. I’m in the middle of a depressive episode, have been sick for the last two months, and my fibromyalgia pain has been spiking. All of these spoon-hoarding gremlins are impacting my own relationships, challenging my sense of who I am and how I navigate the world, and putting gloom-coloured glasses on my view of the future. When I write about self-care for folks who are struggling, it’s easier when I can write about a struggle I am not currently experiencing. It’s easier if I can yell back into the labyrinth from the safety of the outside. Easier, but not always better. It is a myth that the best insights come from people who have “figured it all out” – I believe the opposite is often true. When we are in the thick of it is when we have the most relevant and meaningful insider information. Our struggle is not a barrier to our ability to help each other – it is the fuel that allows us to help each other. This is one of the key principles of narrative therapy, and as much as it challenges me, I am trying to bring it into my own life. Can I write something worthwhile from the heart of the struggle? Yes. Well, I think so. Let’s find out.
What Kate asked about was maintaining intimate relationships while navigating chronic illness or pain. In relationships where one person experiences chronic issues and another doesn’t, those issues can create a significant disparity in ability and access to internal resources. (And in relationships where multiple people are experiencing chronic issues, the pressure resulting from reduced access to resources can grow exponentially.)
Being in the position of having (or perceiving that we have) less to offer often triggers shame, fear, and stress. In my own relationships, I worry that I’m not worth it, that my partners will grow tired of me. I worry that I’m “too much.” I have heard the same worry from my clients.
This anxiety is so natural, and so understandable. Our society does not have readily accessible narratives that include robust “economies of care.” Our most common narrative has to do with “pulling our own weight” in a relationship, and our definitions of balanced relationships rely so heavily on ideas of equality rather than justice. Split the bills 50/50. Take turns washing the dishes. You cook, I’ll clean. My turn/your turn for the laundry, the diapers, the groceries.
And it becomes more complicated when we consider the intangible labour of emotional support and caregiving, which is disproportionately assumed to be the role of women in relationships with men, and, since women are also often the ones experiencing chronic pain or illness, this can compound into a messy and unjust situation pretty quickly. (To back up these claims, check out the links at the end of this post.)
Thankfully, both of these problems – the tit-for-tat approach, and the unjust division of emotional labour – are being challenged by writers, activists, and communities on the margins.
In Three Thoughts on Emotional Labour, Clementine Morrigan writes, “We can name, acknowledge, honour, perform, and yes, accept emotional labour, instead of simply backing away from it because we don’t want to be exploitative.”
This is so challenging for so many of us, because we do not want to exploit our friends, our partners, our communities. When we experience chronic illness or pain, the fear that we might slide into exploitation and “being a burden” becomes amplified. Morrigan suggests that we can ask three guiding questions about the emotional labour we are offering or accepting – Is it consensual? Is it valued? Is it reciprocated?
If we can answer yes to each – if we are discussing what we need and what we can offer, if we are valuing what we are offered and if our own offerings are valued, and if there is reciprocity – fantastic!
But what does reciprocity look like in situations where there is a disparity in access to resources?
Morrigan suggests that:
“It is important to acknowledge that some of us need more care than others. Some of us, due to trauma, disability, mental health stuff, poverty, or other reasons, may not be in a position to provide as much emotional labour as we need to receive. We may go through periods where are able to provide more emotional labour or we may always need more care than we are able to give. We may be able to reciprocate care in some ways and not others. This is totally okay. We need rich networks of emotional care, so that all of us can get the care we need without being depleted. We need communities that value and perform emotional labour—communities that come through for each other. Reciprocity is a commitment to building communities where all of us are cared for and no one is left behind; it is not a one for one exchange.”
It is not a one for one exchange.
This is so critical.
And it’s so hard to make space for this. It’s hard to see our worthiness and the value we bring to a relationship when what we offer has shifted from what we were able to offer before the chronic issue grew up within us and between us.
Not only that, but it’s often hard for our partners to recognize what we’re bringing to the relationship. Not because they don’t love and appreciate and support us, but because they are also caught within the web of accessible narratives and ableist norms.
In order to answer “yes” to Morrigan’s “is it valued?” question, we need to be able to look clearly at the work our partners, friends, and families are doing for us and acknowledge that work. And we need to be able to look clearly at our own work and speak openly about it, so that it can be valued. Neither side of this is easy.
Becoming aware of the skills and insider knowledges that we develop as we live our new pain-, disability-, or illness-enhanced lives can help with recognizing, articulating, and allowing people to value our new contributions.
“Sick and disabled folks have many superpowers: one of them is that we often have highly developed skills around care. Many of us have received shitty, condescending, charity-based care or abusive or coercive care—whether it’s from medical staff or our friends and families. We’re also offered unsolicited medical advice every day of our lives, mostly coming from a place of discomfort with disability and wanting to “fix” us.
All of this has made us very sophisticated at negotiating care, including our understanding that both offering and receiving it is a choice. The idea of consent in care is a radical notion stemming from disabled community wisdom. Ableism mandates that disabled people are supposed to gratefully accept any care offered to “fix” us. It’s mind blowing for many people to run into the common concept in many sick and disabled communities, that disabled people get to decide for ourselves the kind of care we want and need, and say no to the rest. This choicefulness has juicy implications for everyone, including the abled.”
I love her wording here. The juicy implications of choicefulness! Imagine the possibilities of this.
And yet, even as I revel in this juicy and nourishing framework, I remember my own deep and ongoing struggle with the concept of pain, illness, and disability as invitation, as superpower, as self. This radical reorganization of labour within relationships does not come easily, and one of the reasons it’s so challenging is because our concepts of fairness are so influenced by one to one exchanges.
Piepzna-Samarasinha addresses this fear later in the essay, reminding us that, “Disabled people often run into the idea that we can never offer care, just receive it. However, we often talk about the idea that we can still offer care from what our bodies can do. If my disabled body can’t lift yours onto the toilet, it doesn’t mean I can’t care for you—it means I contribute from what my particular body can do. Maybe instead of doing physical care, I can research a medical provider, buy groceries for you, or listen to you vent when one of your dates was ableist.”
We forget that there is still care, still reciprocity available within our relationships even when our ability to perform the tasks we used to, or the tasks we wish we could, has shifted.
Learning how to navigate this shift is challenging.
Searching for resources to share in this post, I was discouraged by the sheer volume of academic research performed by normatively abled “experts” on the outcomes for relationships that include a disabled partner. Once again, the centre scrutinizing the margins. It creates such a disempowering framework.
I was also dismayed by the fact that “should I date a disabled person” was one of the suggested related searches. Gross! GROSS!!!!
These are the narratives, and the social framework, within which we try to navigate our relationships as pain/illness/disability-enhanced individuals.
We need more robust, inclusive, intersectional, and hopeful resources. Not hopeful in the “look on the bright side” gaslighting-via-silver-lining sense. Hopeful in the sense of possibility-generating, hope that, in Sara Ahmed’s words, “animates a struggle.” Hope that reminds us that there are narratives possible outside of the ableist norm, and that we can write those love stories within our own lives.
The parts of ourselves that do not fit tidily into the ableist ideal show up in our relationships in many ways. In order to write those inclusive love stories of any kind – platonic, romantic, familial, or parental – we need to recognize and learn to navigate all of it. Financial, social, emotional, physical, mental – very aspect of ourselves that requires tending and care.
Chronic illness/pain/disability impacts our financial lives – we are often less able to work within normative capitalist models. The 8-5 grind doesn’t work if you can’t manage a desk job for 9 hours a day, and many other jobs are also out of reach. This adds pressure to our partners and social supports. Money is a huge source of shame and fear for many of us, so learning how to talk about requiring financial support, how to shift the balance of contribution in a household – overwhelming! Be gentle with yourselves in these conversations.
I find this particularly challenging. More than almost any other way in which my chronic issues impact my relationships, the financial instability that has been introduced as a result of my no longer being able to work a full-time job feels humiliating and shameful. I am working hard to carve out a living for myself, to build my business in sustainable and anti-ableist ways, to do what has to be done to pay my share of the bills. But my partners still take up more than what feels “fair” in the financial realm, and it’s hard. For me, engaging with writers, activists, and advocates who are challenging capitalism and neoliberalism has been helpful. Recognizing that there are other economic models available has opened up some space for me to still see myself as a contributing member of my partnerships and society.
Chronic illness/pain/disability also impacts our social lives – getting out to see friends can become more challenging. Our partners can end up taking on more social caring work for us, being the ones we talk to when we aren’t getting out (or when we don’t feel safe to talk about our struggle with others).
The aggressive individualism of our current anglo-european culture means that we are often isolated, and this can be so discouraging. Again, I struggle with this personally and I don’t have easy answers.
And searching for resources on parenting with chronic pain, illness, or disability is similarly challenging and disheartening. Parenting with any kind of divergence from the ideal is difficult. The weight of judgement, assumption, erasure, hostility, and isolation is so real. Although more supportive and inclusive blog posts, research papers, and articles are being written, the perception of a weirdly-abled parent is still one of lack, inability, and pity.
We often want to provide everything our children needs, without outside help. That’s the expected ideal. The nuclear family is still the celebrated norm, and the ideal of a normatively abled, neurotypical, stay-at-home, biological parent is still the target to meet. We may recognize that “it takes a village” but we resist the idea that part of what that village offers may be physically chasing after the toddler, lifting the baby, doing homework with the teen, helping with the rent. Just like we need to expand our conception of emotional labour and economies of care within relationships, we need that same expansiveness and redefinition within our parenting relationships and roles.
Which is easy to say, and incredibly hard to do.
At Disability and Representation, Rachel Cohen-Rottenberg writes, “What so many able-bodied feminists don’t get is how profound an experience disability is. I’m not just talking about a profound physical experience. I’m talking about a profound social and political experience. I venture out and I feel like I’m in a separate world, divided from “normal” people by a thin but unmistakeable membrane. In my very friendly and diverse city, I look out and see people of different races and ethnicities walking together on the sidewalk, or shopping, or having lunch. But when I see disabled people, they are usually walking or rolling alone. And if they’re not alone, they’re with a support person or a family member. I rarely see wheelchair users chatting it up with people who walk on two legs. I rarely see cognitively or intellectually disabled people integrated into social settings with nondisabled people. I’m painfully aware of how many people are fine with me as long as I can keep up with their able-bodied standards, and much less fine with me when I actually need something.
So that fear of embracing a new normal, subverting the neoliberal individualist norm, creating new economies of care and radically altering our relationships to be just rather than equal… this doesn’t happen in a vacuum. We aren’t just subverting norms and creating new relationship methods – we are doing so, as parents, under the scrutiny of an ableist and highly punitive culture. We are conscious of the fact that our subversion of norms, which may be possible within adult relationships, may make our parenting relationships more precarious, more tenuous.
Access to external help is readily available to the professional upper class – nannies are a completely acceptable form of external help, and parents are not judged for needing a nanny when that need is created by long working hours. Needing help in order to be more productive? Sure thing. (You’ll still face judgement, of course. Can any parent do it “right,” really? Nope.)
But needing help because of pain, illness, or disability?
That is much less socially sanctioned, and there are far fewer narratives available that leave space for that choice to be aligned with a “good parent” identity.
And yet, many of us do parent while in pain, while ill, while disabled. And we are good parents. Just like we have valuable superpowers of caring that can be brought into our adult relationships, we have the same superpowers of caring to bring into our parenting roles. What we do may look different than the pop culture ideal. How we do it, when we do it, who helps us with it – that might all look different. And that’s scary. But the value it brings to our kids is immeasurable.
One of the invitations that chronic illness, pain, and disability extends is that it pulls the curtain back on how harmful the neoliberal ideology of rugged individualism really is, and asks, “is there another way?”
I’m not great at saying “yes” to that invitation, but I’m getting better at recognizing it when it shows up. I don’t need to have all the answers, because I have a community around me that is brilliant and incredibly generous.
So, when I was struggling with this post, I asked my best friend and one of my partners to help me.
H.P. Longstocking has been dealing with the long-term effects of two significant concussions, and in a moment of discouragement at my own inability to write this post, I asked if she could help me get started. What she sent touched on so much of what I wanted to write about, so eloquently, and I’m ending this post with her incredibly valuable contribution. She is a parent, a scholar, and an integral part of the social net that keeps me going. I think there’s hope in how she has responded to this.
While I am no stranger to depression or anxiety, I had never experienced a chronic debilitating illness and I found that my self-care habits and techniques were no longer usually helpful or even always possible. Last summer I had several concussions. Because I had sustained so many as a child, these two accidents completely changed my life. Most of the summer I was not safe to drive or even walk as my second concussion happened when I tried to walk out of my bedroom and due to the concussion symptoms, I cracked my head into a wall. I could not look at screens, read, handle light or loud noises, and was told to stop having sex. All of my self-care habits were taken away.
I have always been an active person. Running and cycling have been my times of meditation and recalibration. Dancing brings me joy. Physical activity has been an integral part of my self-care since I was a small child. To have days, weeks, and months where walking short distances is the most physical activity I can safely manage, and some days not even that, has had a detrimental impact on my body and my emotional well-being.
I used to love to read. I devoured books and articles. I had just started my Masters and was supposed to be immersing myself in the scientific literature. I could not do any of that. I still struggle. Reading was my escape, my lifeline, my lifeblood, and I hoped, my livelihood. Now it causes me pain.
I was not prepared for the constant, chronic pain. Previously, I had headaches so rarely, I did not recognize them the few times a year I would experience one. Now, I have a hard time recognizing it because I am never without one. I find that I have my face screwed up in pain after someone reacts to me as if I am scowling at them. My coping mechanisms for the pain are to hyperfocus on something so I am unaware of most of the world around me. Unfortunately, this is usually my phone which in the long term makes it worse, but also as it gets worse, I have less self-control and ability to stop myself.
All of this has impacted my relationships. Without the ability to drive, I am often limited in who I can see and where I can go. Even without that, I am easily tired in social settings and my words begin to slur in mental exhaustion. I cannot handle loud spaces for very long, or if I do, I pay for it with days of recovery. I often feel isolated, alone, and incapable of taking care of myself, let alone being the partner, parent, and student I aspire to be.
But, I have adapted. Instead of reading, I listen to audiobooks. Instead of digesting dense theory or the latest studies, I listen to light narratives and fiction that has a plot so predicable that I can fall asleep and not miss much. I go for short walks instead of long bike rides.
My relationships have also changed.
It is hard to feel like you are not carrying your weight, especially in this neoliberal culture where people are valued according to how much productive and profitable output they can do. It is hard to be a partner with someone when you are more dependent and roommate than lover. It is hard not be able to see people, leave the house, focus on what someone is saying, or do what they are doing. It is so isolating and would be so much more so with poverty added as well. It hurts to see your kids do an impression of you which is just sleeping.
My friendships have changed. I am slowly learning to ask for help. To say no. To cancel plans last minute because it is not safe that day for me to go out. I cancel plans so often now that I am scared to make them. Much of my socialization now is online and sporadic. There is a price to pay for too much screen time. I am spending more time with people I do not have to hide my pain from. I do not have the resources to put up with mind games and people who suck energy. I have a few friends that make safe spaces for me to come and just nap around them so I won’t feel alone. My life is rich, even though my world and abilities have shrunk.
Self-care looks entirely different to me now. Instead of the sun on my face and the pounding of my feet on running paths, I sip tea wearing sunglasses. Instead of pushing through discomfort, I am learning to listen to it so that I do not make things worse. Instead of losing myself in the written word, I find comfort in story, sound and other sensory delights. Some of the people I spend time with have changed, and the ways I spend time with people have also. I do not know which symptoms will resolve and which I will have for the rest of my life, but while I grieve for friendships and opportunities lost, I am also grateful for the capacity to change and adapt, and trust that relationships worth holding onto can withstand the changes as well.
Further reading on emotional labour:
Wondering about women’s differential experiences of pain? Check out the trans-inclusive Popaganda podcast on Women and Pain.
And we can’t discuss differential expectations of emotional labour without acknowledging misogynoir and the demands on Black women to be caregivers for their own communities and the white communities around them. Misogynoir and Black Women’s Unpaid Emotional Labour touches on this issue.
And then, tie it back to chronic illness, chronic pain, disability. Disability and Emotional Labour talks about these issues, and although it’s an article related specifically to activism, it comes into our lives and relationships in many ways.
I’ve spent the last couple days mapping out my immediate upcoming projects. It’s pretty exciting, and there are many things coming up that you can be part of!
Check these projects, collaborations, and events out, and get in touch with me if there’s anything that piques your interest.
I’m launching a book club for parents, stepparents, and caregivers of autistic kids. We’ll be reading books by autistic authors, and recentering the conversation about what autistic kids need away from neurotypical experts, to autistic experts. I feel like this is a critical counter to the standard approach, and it’s important to me because both of my stepkids are autistic. I want to do the best that I can for them, and that means listening to autistic adults. You can get involved by sending me a message and letting me know you want in. Unlike most of my work, this one will be in person. We’ll be meeting once a month-ish at my home, so space is limited. However, I’ll be writing up a detailed review of each of the books we read, and those reviews will be posted on my Patreon, and then on this blog.
I’m collaborating on the creation of a resource for extroverts, addressing self-care and mental health, since so much of the available self-care and mental health writing assumes introversion, or assumes that being outgoing and social is incompatible with depression or suicidality. You can get involved by sending me a message. Our first in-person round table discussion is coming up on Saturday, and there will be a second in-person round table discussion later on. You can participate online (in text or skype interviews), in person (in one-on-one interviews or round table discussions), or some combination of these. I am particularly interested in talking with folks whose experience of extroversion has been impacted by cultural norms that don’t leave space for extroversion. (For example, autistic folks are assumed to be inherently introverted, and so are many Asian folks, while Black and Indigenous women are interpreted as “angry” or irrational if they’re extroverted, and women in general often find it difficult to be accepted as extroverts without being shamed for being “gossipy,” “loud,” or other unacceptable things.)
I’m collaborating with my brilliant sibling, Domini Packer, to create a resource for survivors and supporters following sexual assault, to help build and sustain networks of support following a crisis. You can get involved by sending me a message. We’re meeting with people one on one to chat, and also talking with folks online. This is going to turn into a zine (or similar), with stories, resources, and action plans for survivors and supporters following sexual assault. We noticed a pretty big gap in the available resources, and a lot of “lean on your community” without a lot of insight into what that looks like, how to ask for what you need, how to keep boundaries between yourself and your supporters. And for supporters, a lot of “believe them, be there for them” without a lot of information about how to do self-care during the crisis so you don’t end up burning out (or worse, turning around and leaning back on the person who has just been through a trauma), how to maintain boundaries with the person you’re supporting, how to reach out for your own support in safe and respectful ways. We’re going to attempt to fill that gap a bit. I’m also interested in talking with professionals who would like to contribute. (This one is coming up quickly, so get in touch asap if you want to be involved.)
I’m working on a resource to help folks navigate those “Bad Gender Feels” days. This project is in the germination stage, but I am starting to meet with folks to talk about what would be helpful and what they’d like to see included in a resource like this. This resource will also include information for parents and other supporters of trans and gender non-conforming kids who want to help them get through those dysphoric days.
Possibilities Calgary events are running on the third Tuesday of each month at Loft 112 in Calgary’s East Village, and are always free to attend. Every month has a theme, and our in-person discussion becomes the framework for a shareable, downloadable, free resource booklet. You can participate at the conversations, or by sending your ideas or suggestions once the monthly topic is announced. (January is Winter Self-Care for Weary Queers.)
The Self-Care Salons are running every month on the first or second Sunday at Loft 112 in the East Village. The cost is $50, sliding scale is available. Every month includes an in-depth conversation and a resource book. 10% of the profit from the Self-Care Salon goes to the Awo Taan Healing Lodge. (In January, Vincci Tsui, RD will be facilitating a discussion about food, health, and bodies that is size-inclusive, anti-diet, fatphobia-challenging – Self-Care Salon: Bodies, Food, and Health.)
Bridges and Boundaries: Social Self-Care will be launching Jan 22. It’s a 6-week online course focusing on building tools for social self-care. The cost is $150, sliding scale is available, and it’s going to be awesome. You can sign up by sending me a message.
You can also get involved by supporting my Patreon. And at the $10/month level, I’ll write you a post on the self-care topic of your choice. My Patreon supporters are the reason I’m able to put so much time and effort into developing resources that are comprehensive, inclusive, and available for free.
And, lastly, my self-care and narrative coaching (for individuals and relationships) is on sale until the end of January. You can check out my services on my Facebook page (I’m in the process of updating this website to be up to date), or you can just send me an email! A single session ($150) is 10% off, a package of 3 ($400) is 15% off, and a package of 10 ($1200) is 20% off.
There are other projects coming up that aren’t collaborations or events, too. Blog posts and other plans for creating new work, mapping out my content focus for the year. 2017 focused on wholeness and integration, and 2018 will focus on hope. I’m in the process of figuring out what that means, and how to bring that focus into my various pieces of work.
I’m also working on pulling some of my work off of Facebook and making it accessible elsewhere. I’ll be shifting my Tender Year posts into a new blog (and cross-posting with Facebook), and once that’s up and running, I’ll share the link here. I’ll also be posting more of my self-care content onto my Tiffany Sostar blog so that people can read it without being on Facebook.
And, perhaps most exciting for me, two major projects are lurching up to speed:
the book I’ve been talking about and writing about and thinking about for ages is happening and I’ve started to pull the content together for it, so watch for updates on the 100 Love Letters book coming throughout this year, and,
I’m 83% certain I’ll be doing the Masters in Narrative Therapy and Community Work this year at the Dulwich Centre (I’ve been accepted into the program, and now I just need to sort out funding – yikes!)
And one major project is just starting to simmer more assertively:
I’m putting together my speaker event wish list, and starting to think about restarting the UnConference Series and bringing people in for events (Avery Alder is at the top of my wish list, and I’m hoping I’ll be able to bring her in for a weekend workshop on transformative gaming sometime this year).
2018 is going to be about continuing to do what I love, learning how to do it more sustainably and effectively, and working with my communities to develop strategies and resources for resilience and hope. It’s going to be good.