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Unlike many disabled and chronically ill people, I didn’t have to fight or wait for diagnoses. They were given to me with no or little effort: cerebral palsy (CP), shortly after my birth, and Borderline Personality Disorder (BPD) in early adulthood.
In addition, my diagnostic labels have mostly been advantageous. Cerebral palsy is the most common physical disability in childhood, and there’s a clear treatment path which, in my case, included physiotherapy, occupational therapy and ankle foot orthotics (AFOs).
There’s a highly effective (albeit expensive) treatment available for BPD, too, in the form of Dialectical Behaviour Therapy. Though it might not be as effective for everyone, it’s been beneficial – life-saving – for me. I had the privilege of accessing it as an adolescent through the private health system, bearing the brunt of only a few prejudiced GPs before I found a suitable clinic and clinician.
In her 2019 book, Pain and Prejudice, Gabrielle Jackson likens a BPD diagnosis to a modern form of ‘hysteria’ – a label used (primarily by male physicians) to dismiss and belittle women struggling with an array of symptoms. Jackson notes that several other conditions carry equal or greater stigma: fibromyalgia, endometriosis, myalgic encephalomyelitis. I’ve heard countless stories from friends and people on social media, who haven’t been as fortunate as me. Who have been refused treatment on the basis of their diagnosis, told that their debilitating symptoms are, “all in your head,” or that they’re “looking for attention.”
Isn’t everyone who sees a doctor looking for medical attention?
Jackson also points out that media representations of these diagnoses reinforce their maligned status. Just last week, I picked up a book that had been recommended to me by my favourite bookseller, eager to begin. Yet only a few pages in, there it was: BPD as the butt of a joke. My diagnosis used as unfavorable adjective by a male author with – to my knowledge – no lived experience of it and certainly no concept of the harm his words perpetuate. For many, media representation like this is the only direct exposure they’ll have to disability, so it forms the basis of their attitudes.
When I tell people I have CP, the response usually indicates some level of familiarity with the condition among the public and understanding among medical professionals. If I mention BPD – and I do so rarely, because of the stigma attached – I’ll be met with blank stares or confusion from the first group, discomfort from the second. Gazes often darting to the scars on my limbs with a new, negative recognition.
My experiences - particularly the contrast between CP and BPD - lead me to believe that the issue isn’t with diagnosis itself, rather with the professional and societal reactions to and understandings of it.
Therefore, experiences of diagnosis can change, with an overhaul of individual and systemic biases. Medical students need to be taught about the manifestations of different conditions for all genders, not just cisgender men. Publishers, screenwriters, authors and editors need to consider the words they’re putting into the world and choose inclusive rather than harmful ones. And everyone needs to reflect on and shift their biases against certain diagnoses.
Then, and only then, will diagnosis become a pathway to treatment and something we don’t have to hide for fear of its consequences.