Why I’m Distancing Myself From My Borderline Personality Disorder Diagnosis

May was Borderline Personality Disorder (BPD) Awareness month but this year it has been marred with negative press. It has been used in the libel case against Johnny Depp to make Amber Heard’s testimony seem less credible, in part suggesting that having BPD is proof of unreliable character. And thanks to media such as Girl, Interrupted and Crazy Ex-Girlfriend still being the most visible portrayals of the disorder, BPD can’t seem to shake off the image of only affecting privileged, quirky white women. So why is BPD still such a controversial diagnosis? And what does that mean for people of colour who have been diagnosed? 

BPD, also known as Emotional Unstable Personality Disorder, is characterised most commonly by drastic mood swings and emotional instability. There are no approved drugs to treat it, and accessing treatment usually relies on being on the NHS therapy waitlist for months, sometimes years at a time. It’s fairly common, affecting about 1 in 100 people in the UK, of which I am one. I was diagnosed with BPD in 2018 after a lifetime of bubbling mental unrest led to a crisis point. I did everything we mentally unhealthy people are told to do in a crisis: I called a mental health charity, who in turn called paramedics for me, who were incredibly sweet and patient and whizzed me off to A&E where they assured me I would be looked after. From there it went downhill. 

I was kept locked in a room to ‘calm down’ for five hours. My phone died so I couldn’t tell anyone where I was. And when I was discharged, they said it was best I go because it was unfair to keep my family waiting outside for me for so long. I had come alone - the doctors just assumed that the Black family sitting near me in the A&E waiting room was with me. With no money on me for the bus, and no phone to call a friend, I walked forty-five minutes back home in the dark alone. 

In my years since being diagnosed, I’ve often thought about how let down and overlooked I felt in that moment when I was at my most vulnerable, and curious to hear how other people of colour with BPD have found their treatment journey. The Adult Psychiatric Morbidity Survey (APMS) released data that suggests Black, Asian and mixed-ethnicity people are diagnosed with personality disorders at a higher rate than white people in England. “Being a Black woman is quite confusing in navigating the medical field for help and support,” says Fauziya Johnson. She was diagnosed with BPD at 21, after experiencing symptoms since the age of 11. “On one hand, we are seen by some as overly emotional, usually stereotyped by us being assertive or firm as aggression  and on the other, viewed as people who cannot feel as much pain – emotional and physical — as our white counterparts.” Black and mixed women surveyed also made up a higher percentage of those diagnosed than men of the same ethnicities.

After being diagnosed, Johnson founded The BPD Chronicles, a platform which allows participants with BPD to share their experiences. In conducting the interviews, Johnson found various patterns began appearing amongst the participants: “Their reporting of experiences regarding childhood or adolescent trauma, their online research of BPD producing sources and narratives which created stigmatised impressions of the disorder, and a negative experience of the road up to the diagnostic process and aftercare (or lack of).” 

The online research is an issue I can relate to. When typing in Borderline Personality Disorder into Google, the suggested questions that arise include hits such as, ‘Do borderlines lie a lot?’ and ‘Can a person with BPD really love?’ Clicking these links will tell you that another BPD symptom is having unstable relationships with others due to behaviours such as ‘constantly phone and texting a person’ or ‘making threats to harm or kill yourself if that person ever leaves you.' The NHS says those with BPD experience symptoms that are likely to cause the breakdown of their relationships. 

Learning this engulfed me. Every time a relationship failed often for completely innocuous reasons, for which no one was at fault)it led me down a spiral of thinking: this is my fault because I have BPD, and people with BPD are so awful that we cannot maintain relationships. This type of negative self-talk is also a classic BPD symptom itself. But when the diagnosis itself tells you that you’re a bad person prone to bad behaviour, that you’re the reason for your loneliness and lack of supportive relationships, it’s difficult to separate negative thinking patterns about being a bad person from, well, actually being a bad person. In moments like those, my diagnosis was not helpful towards my healing, it was a hindrance. 

Because of this, BPD is recognised as a controversial diagnosis by some in the medical profession and by those with the diagnosis themselves. Mind, one of the UK's leading charities for mental health care acknowledges these controversies clearly on their BPD support page, noting that the diagnosis ‘doesn’t take social context into enough account’ and that ‘’experiencing stigma and discrimination, like racism sexism, homophobia, biphobia or transphobia’ can have an impact on mental wellbeing. So, I happen to experience racism from a young age and now it’s my personality which must be disordered? That hardly seems fair. If BPD is more common in marginalised identities, and those who have experienced some sort of childhood trauma (of which racial trauma should be considered) should BPD symptoms always be approached as evidence of a disordered personality, or might it be beneficial to see it as a psychological response to a disordered society? 

This stigma doesn’t just affect how those with BPD see themselves, it has a measurable effect on patient care too. A 2014 analysis of several studies on the effects of BPD stigma noted that “nurses commonly view BPD patients as difficult, annoying, manipulative, treatment-resistant, dangerous, attention-seeking, nuisances, and timewasters,” and that “BPD is marginalised at the levels of policy, planning, staff training and service delivery, perhaps representing social oppression or institutional abuse.” The stereotypes of what it means to be a person with BPD often share similarities with prevalent stereotypes of ethnic minorities and in turn the barriers to access that come with such prejudices. Does the stigma come from stereotypes about the disorder itself, or pre-existing stereotypes about the individuals more likely to be diagnosed with it? Whatever the answer, it seems that the stigma is embedded within the systems put in place to provide support. 

This is why I’ve distanced myself from the diagnosis as my treatment journey progresses. A 2018 report from Scotland found that the negative attitudes toward BPD were 'the most commonly mentioned trigger' for a mental health crisis in those with BPD. This stigma is continuously getting in the way of helping those who suffer from it, and I am disinclined to sacrifice my wellness to fit into the ‘BPD box’ and be burdened by the negative associations that come with it.  But this is a scary disorder, with 1 in 10 diagnosed likely to commit suicide. Receiving this diagnosis should not further alienate those who need the most help. 

“I, and my participants, mostly wish there was more education about the symptomology of BPD,” Fauziya Johnson explains, “and that there was more effort for the stereotypes of BPD to be examined and put into context accurately, rather than using it for purposes that only hinder the diagnosis.” This is not a mental health issue to be taken lightly, and for those who find comfort in the diagnosis, it’s important that they are able to access treatment and discuss it openly without the fear of being seen as a bad person for having something outside of their control. If there is one thing to be aware of, it’s that breaking down the stigma might be the most important first step to help.

 
If you are struggling with mental health issues please contact your GP or mental health charity Mind for more help on 0300 123 3393 or text 86463.