On (Mis)Diagnosis, BPD, and the Fear of Abandonment

Last year I was misdiagnosed with borderline personality disorder (BPD). A psychiatrist made this determination after roughly forty-five minutes of talking over the phone, and a series of diagnostic questionnaires filled out in an empty office. We never met face-to-face. Given my previous experience of misdiagnosis and mal-treatment as a pre-teen, it was a very difficult experience. I had begun the conversation by explaining I was a psychiatric survivor. “What’s that?” he asked, and then interrupted me mid-explanation to explain that yes, psychiatry was less advanced when I was a child, and mistakes were made, but I should trust that it has improved and now presents no risks to me as a treatment modality.

I would later tell this same psychiatrist (before leaving his practice to seek a second opinion) that I believed BPD was an inaccurate and inappropriate diagnosis, and I suspected that in fact I had always been autistic – the misdiagnosis of autistic people as borderline is not uncommon. He immediately rejected this possibility without any further investigation, saying “I treat autistic people. You’re too functional. Autistic people can’t function like you.”

This attitude – setting aside that I was in fact struggling very much to function and complete basic everyday tasks at the time – reflects a woefully outdated and prejudiced view of autism. In reality, autistic people can have wildly varying levels of ability which can also fluctuate over time. It turned out of course that I knew myself pretty well and he was wrong. After a thorough assessment with a psychologist who specializes in autism, I received a diagnosis that better captures and explains my experience, including those traits attributed to BPD.

My experience of benefiting from a late diagnosis of autism is a story for another day. As an undergraduate I’ve written elsewhere about the potential of diagnosis to be either helpful or harmful, though in my case it has generally been disastrous. I’ve also scratched the surface of other critical approaches that question the validity of BPD diagnosis entirely. But there is one symptom on the list of criteria for BPD that I relate to very much, and I want to talk about why it’s a problem.

Shared with Creative Commons license (Attribution 2.0 Generic (CC BY 2.0)) Original image attributed to gennaro cicalese.it (https://flickr.com/photos/gemnaro/)

One common marker of BPD is a fear of abandonment. Well holy schnitzel have I got that in spades. Clinicians say the BPD patient acts out this fear through erratic or intense behaviour which unwittingly pushes others away, increasing alienation and justifying the horrible thought that the patient is unlovable, that abandonment is what they deserve. The patient may withdraw from people, avoid relationships altogether, or cling desperately to others out of a crippling fear of being abandoned again.

I have intensely feared abandonment as far back as I can remember, and I have acted out that fear throughout my life in ways that have led to my complete alienation from almost everyone I’ve ever known, completely unaware of what I was doing, and frequently wondering why people seemed to avoid me like a plague. Life has been for me, more than anything else, torturously lonely. This is one reason that writing is such a tonic; I can break through the isolation and make contact with other people while remaining in solitude.

It’s a compounding fear too – I fear being abandoned, but I also fear being seen as someone who fears being abandoned. I try to be stoic, pretend I need no one, all in order to avoid being perceived as too sensitive, too emotional, too clingy, and therefore not good enough. In other words, I try to avoid being perceived as deserving abandonment.

It’s an exhausting fear. It often seems easier to be a dedicated loner – but then again, I don’t have much choice in the matter, since people tend to leave me alone, and I usually lack the wherewithal to reach out, opting instead to abandon others before they get a chance to abandon me.

Before the pandemic arrived, I had been working with a therapist to learn some adult social skills. Yes, I am an adult, and no, I have no idea how to make or maintain relationships with others. I mean, I know in theory what’s involved, but I face significant barriers in following through. Now, with social isolation being a well-practiced habit over the course of repeated pandemic lockdowns, those barriers are almost insurmountable.

In hindsight I can see how this fear has defined much of my life. I was always an anxious person, but feeling abandoned was a particularly powerful trigger. When I was a child and my parents took me to school for the first time I howled the blurry-eyed tears of a great injustice being committed. It seemed cruel and illogical to me that I should have to be separated from those I love and dumped into a room of strangers in order to learn. This experience would later be described as separation anxiety, explaining nothing of significance but implying that I was somehow a weak, deficient child for wanting to be with my family.

Roughly half a decade later my best friend from school moved across the country following his mother’s new job. My family bought his old house and his old room became mine. For months I was haunted by his absence and would cry regularly, overwhelmed with the sadness of knowing he and I would never play in that room again. To this day, recalling that separation brings up feelings of sadness and regret about losing my best friend. For years I’ve wondered if that makes me a weak or broken person.

The fear of abandonment only got worse over time after I was subjected to psychiatric treatment as a pre-teen. While everyone else I knew was discovering their independence and unique personalities during adolescence, I was being tossed around like a hot potato of anxiety, confusion, and dread between various diagnoses, schools, and clinicians. My treatment plan never involved learning how to make friends or maintain relationships. To the contrary, it involved isolating me from the general population. I was taken out of class, then taken out of school, put into a rehabilitation program at the local children’s hospital where my only acquaintances were with other distressed kids. The problem was always located squarely in me, and never in my relationships with others.

When my most severe episode of suicidal depression passed and I was re-admitted to high school, I happened on a few friends by chance (sad, weird kids seem to congregate naturally sometimes) and obsessed over my first long-term relationship. For awhile, I felt like I had integrated. Then high school ended, and not long after that my relationship fell apart. All my friends had moved on to their respective career paths in different places across the country, and I realized I had no idea how to meet people outside of an institutional setting of forced interaction. To find some sense of community has been an ongoing struggle ever since.

After the utter solitude of being suicidally depressed as a young teen, I had hoped that I would never feel such isolation and alienation again once I was declared “rehabilitated”, but it has become the single most debilitating feature of my life, perhaps only second to being chronically poor.

There have been some periods of exception. As a young adult I enjoyed a brief stint as a spoken-word artist and musician, and for a little while that community held me and made me feel human again. But that didn’t last either – I became a father, then a single father, abandoned by my flash-in-the-pan romance. Old friends stopped calling or visiting, and pretty soon I found myself being bullied and slowly squeezed out of the artistic community I had come to regard as family. I was right back where I had started as a teenager, but now a parent.

Later in university I had fleeting moments of closeness with other people, and I made a few friends that I can still call on today. At least I think so. This is how debilitating this fear has become – I have experienced abandonment so many times by now that my baseline state includes the belief that I am a burden to others, an unlovable, undesirable hot mess, and that no one would willingly be my friend. So I feel guilty for having the friends I have, and regularly wonder if they are my friends, or if they just feel sorry enough for me that they haven’t abandoned me – yet.

This may all sound perfectly crazy, and worthy of a psychiatric diagnosis, but I have real problems with the medical model framing that gets imposed on this type of experience. Am I afraid of abandonment because there’s something wrong with me? Because I have a brain disorder? Is it an irrational, pathological fear? Or is it the result of actually… I don’t know… being abandoned?

Shared with Creative Commons license (Attribution-NonCommercial 2.0 Generic (CC BY-NC 2.0)) Original image attributed to Cristiano Oliveira (https://flickr.com/photos/olivcris/)

Being repeatedly abandoned is a scary thing. When you are told as a child that your feelings are pathological, that you are “imbalanced” and require fixing; when you are separated from your friends and peers for fear of being a danger to them; when schools won’t teach you and doctors can’t treat you and your family and friends begin to regard you with the stigma of a sick person, how else are you supposed to feel?

Despite flirtations with belonging, my adult life has been marked by a chronic feeling of worthless isolation. I know that probably sounds irrational, and I know it’s not always the truth – I know I have genuine friendships and other loving relationships in my life that are valued as more than acts of pity. But the fear of abandonment comes to me as a rational process, not a symptom of illness. I am afraid of abandonment because I have been abandoned, subjected to alienation and isolation repeatedly by those I love and trust most. I am a survivor of childhood emotional neglect, psychiatric abuse, violent assault, sexual abuse, peer exclusion, ableism and institutional betrayal. It would be shocking if I were NOT afraid of abandonment.

Abandonment was built into my experience of madness from the beginning. I didn’t like school, and I didn’t want to go. It still seems cruel that I was forced to despite my distress, but there were no other options for me. I felt abandoned by my family when given over to the education system. And when my sadness became unbearable, I felt abandoned by the education system, which first isolated me from my peers, and then gave me up to the health care system. That system gave me drugs that drove me into the darkest despair I’ve ever known, denied the validity of my experience, and then declared me rehabilitated and threw me back into the education system again without any meaningful support, where I was shortly invited to drop out, abandoned to the world without credentials or experience or support.

Never along the way was it suggested that I needed to be accommodated outside of the usual institutional settings for the neurotypical learner, or that my support system was inadequate. I still long for an education that meets my unique needs, and consider it an injustice that I have been excluded from pursuing my interests at school. Instead, I was medicalized, coerced into rewriting my personality, and punished when I failed to fit into the neurotypical narrative.

So yes, I experience an intense fear of abandonment that has been a significant obstacle to developing lasting relationships throughout my life. The medical model tells me that this is my fault because I have a disorder, because I am pathologically difficult. Because I am mad.

I may be mad, but that madness is not experienced as disease. To me it is a healthy response to an emotionally abusive culture. From where I stand it’s obvious that the society I was born into is built on the horribly cruel premise that one’s personality must conform to an arbitrary definition of sanity – which really has more to do with a person’s ability to be exploited for their labour than it has to do with their wellbeing – or else we are condemned to a life of abuse, marginalization, alienation, stigmatization, and poorer socioeconomic outcomes. Moreover, we are blamed as the cause of this maltreatment.

I was abandoned by society before I became a member of it, because there is no room for an emotional young boy to exist in a culture that resists and denies anything that challenges the sanist heteronormative narrative; the narrative that tells us boys don’t cry, and if they do, there’s something wrong with them; the narrative that tells us that to be anything less than happy and well adjusted is to be sick. Yet I contend that to be happy and well-adjusted in a cruel and sick world is itself pathological. In some way, my disorder is a response to that pathology, a response that deserves to be heard. The diagnosis of BPD felt like a weapon to me, employed in the interests of this mainstream narrative and designed to deny my experience, silence my voice, and blame me for the suffering caused by a brutal and uncaring society.

I’m left wondering, to what extent does BPD describe a condition that takes place in the mind of the mad patient, and to what extent does BPD describe eccentric, creative, unorthodox and atypical personalities which have been systemically excluded and oppressed by a sanist culture? To what extent is it an effective explanatory tool for understanding my condition, and to what extent is that tool weaponized to prevent ‘undesirable’ personalities from participating as equals in society? I don’t want to invalidate the experiences of those who have found comfort in identifying with the same diagnosis, but I maintain that my experience is not a symptom of biological pathology, not a sign of a disordered personality, but a form of psychological resistance to widespread and systemic social injustices.

We need to make room in society for different kinds of personalities rather than pathologize the ones that are inconvenient. Philosopher John Stuart Mill wrote in On Liberty that eccentrics were essential to maintaining a healthy public sphere, because they contributed unorthodox ideas into the discourse of society. People who are sensitive, who get deeply attached, who see harms in the ways our institutions and broader social forces treat us, we deserve to exist, to be a part of the world, and to make our own unique contribution to that world, even if it means challenging deeply held beliefs about what it means to be a rational and successful human being, or what it means to have a healthy personality.

I do not want to fear abandonment for the rest of my life. I do not want to feel isolated, alienated, and alone. I’m working on it, and some day I’ll get there, but it won’t be through a diagnosis or prescription that I succeed in recovering from this debilitating fear. Because I feel this way for good reasons, and I know that part of the solution is out of my control. It depends on neurotypical people becoming more tolerant, compassionate, and educated about madness, making space for us to exist and thrive in a truly open and tolerant society.

What I do want is to accept and embrace my eccentric personality as a gift, as a strength that empowers me to contribute something of value to the world. What I want is to become creatively mal-adjusted. I’m borrowing this phrase after listening to Mad In America’s moving interview with Donzaleigh Abernathy, god-daughter of Martin Luther King Jr., who advocated that in an unjust world we should all seek to become creatively maladjusted, to refuse to accept the social ills that define our culture, and to become a force of resistance to those ills. For me, this is what healing looks like, and this is what my madness represents: not a pathology to be cured, but a form of resistance to the pathology of the world.

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