I am sitting facing a trainee doctor of some sort during my admissions assessment. Snippily, she tells I “need psychoeducation”, to learn about “my diagnosis”. I blink back at her. I am unaware I have a diagnosis.
My experience of misdiagnosis is complicated by the fact I was never officially diagnosed with Borderline/Emotionally Unstable Personality Disorder. Until my first ‘long’ hypo/manic episode of Summer 2015, no one really knew quite what was going on with me. Bipolar disorder had been speculated in the past, but it was always decided my highs were never high enough or lasted long enough, but from October 2013, my notes stated it was an ‘underlying possibility’.
So I am 18, 19, 20. I am fed antidepressants which propel me into horrible mixed episodes. I purge because I am anxious. I drink because I don’t know how to block out the racing thoughts and restlessness. I leave most appointments with my psychiatrist screaming or in tears because no one can tell me what is going on inside my head. When my mood is mixed, I self harm- the only way I know how to manage burning agitation. Self harm, impulsivity, unstable mood, apparent outbursts of anger (which, I’ll add, were exclusive only to the consultant psychiatrist and another psychiatrist I was seeing at the time). When I am diagnosed with cyclothymia a week before it it switched to bipolar disorder, the consultant tells me he can see why my low moods up until then were mistaken for a personality disorder. Self harm, impulsivity, unstable mood, outbursts of anger being some of the hallmark symptoms of Borderline/Emotionally Unstable Personality Disorder.
The inpatient (and former outpatient) consultant hmm’s and haa’s and is vague and non committal each time I see him. Which frustrates me further. He blows hot and cold over a PD diagnosis. His host of junior doctors tell me I have one, yet each time I ask him, he insists he hasn’t diagnosed me with one. Yet his language, the way he speaks about “people with your condition”, leads me to believe he has. My CPN tells me when I bring it up that she “wasn’t aware” that I’d been diagnosed with EUPD/BPD, and that both she and the consultant ‘recognised’ that it was my mood that was the main issue.
At 18, 19, 20, I am angry, frustrated, confused. I am being treated as a borderline without actually having the diagnosis. Each symptom I complain of is met with a wave of the hand, a polite nod. I am put on sertraline. I spend six months on it before it is reviewed. I drink my way through my A Levels. I sneak alcohol into school on my last day, hide bottles of wine in my underwear drawer, spend 12 hours a day studying, spend the night drinking myself into a stupor, then bounce out of bed at 8am the next morning to do it all again. I drink four, five, six days a week. I stand on my toilet seat and hang out my bathroom window, laughing up at the stars, leg jigging. My brain eats me. When I am finally reviewed, the psychiatrist tells me it sounds like mania. The next time I see her, she announces that it wasn’t mania, “the consultant said you don’t have a mental illness” Ahh yes, that would be the consultant who breezed in at the end of my assessment with a junior doctor to sign of the sertraline script. A thorough assessment indeed.
And so begins the merry-go-round. I just want an answer, and no one seems particularly keen to give me one, but everyone is also pretty good at treating me as if I have a personality disorder. The psychiatrist I see most often throws an endless stream of upsetting and invalidating comments at me- I am told to “get on with it”, that “others have it worse”. I am handed antidepressant after antidepressant, with a little quetiapine thrown into the mix, with no one telling me what it was supposed to do. In hospital, two of the nurses are cold and harsh and snap at me about my ‘behaviour’. I ask for help and am told it’s “too late”. I collapse on the floor, am told I am “upsetting others”. I am called selfish, told to think of my “poor mother”, told I was “fine a minute ago”, told to “stop that now”. I cry and scream and swear at the consultant, trying to be heard. I want off the citalopram. I am a raging tornado. A messy ball of mixed energy. The quetiapine is upped, the citalopram stopped, the messiness subsides and is replaced with a crushing low. In ward round, admission number four, I ask the consultant how my mood fits in with BPD/EUPD, if the moods associated with it last only a few days- it has been weeks. He mumbles something vague about how the other symptoms of the illness can make people feel depressed. “But day to day, I’m not affected by unstable relationships or angry outbursts or a fear of abandonment- so how can they be affecting my mood.” If he says anything in response, it was nothing significant. He is stumped. Afterwards, the nurse that was in with me tells me I spoke well. I write the consultant a letter. I tell him I feel he is treating my broken arm but ignoring my broken leg. A professionals meeting is held. It is decided I will have a formal assessment with the Personality Disorders Service.
Summer 2015. The assessment is five, mostly 2hr sessions long. We get into the nitty gritty. She tries to tease out whether things are mood related or personality related. At the end, she surmises that my scores indicate I do not have a personality disorder, and if my symptoms are indeed mood related, my scores come down further still. I cry. A weight is lifted.
Misdiagnosis can be hugely, hugely damaging. Despite never ‘formally’ being diagnosed with BPD/EUPD, I still felt the stigma of it from healthcare professionals, and still received the ‘wrong’ treatment for the condition I do have- the treatment pathways being hugely different for personality and mood disorders. The experience of being misdiagnosed has played a huge part in my current struggle of accepting the diagnosis I have now- Bipolar Disorder. Such a huge part of me fears that if I accept it, someone might turn around and say “nope, actually, we were wrong about that too!”
For years, no one could tell me what was ‘wrong’ with me, and while I appreciate that it took the time it did for my symptoms to be correctly observed and accurately diagnosed, it was extremely unhelpful, frustrating and upsetting to be strung along in the way I was. Had there been any doubt about what it was I was struggling with, I should’ve been told that upfront and absolutely, instead of having the experience I had of one person telling me one thing, and another telling me something different.
I’d have preferred the consultant tell me “I don’t know”, than leave me feeling more mixed up, more confused, more uncertain, and more frustrated. I still struggle with being ‘mislabelled’ and perhaps unprofessionally treated as a result. No one is held accountable or apologises for misdiagnosis, or appreciates just how difficult it can be for people. Misdiagnosing is telling someone they have a potentially life long, life limiting condition, letting them experience all the emotions of coming to terms with that, and then going “whoops, just kidding!”