[This post discusses stigma and discrimination, please take care]
the psychiatrist who said it was 'better' if bpd wasn't in my notes
When I was diagnosed with BPD back in 2014, the psychiatrist said that she wouldn't put the diagnosis in my notes. She told me that it would be better to keep BPD 'off the record' so that medical professionals didn't discriminate against me.
I kept largely quiet about for years. I didn't get the help I needed. I was locked into an abusive relationship with a person who told me that I was 'more ****ed up than I would ever know' and that my BPD meant I would never have a happy relationship. I even didn't tell a therapist for getting close to four months that I had a BPD diagnosis because I was so scared of being rejected and not having anyone. I would go to the doctor and talk about my mental health, but not mention BPD. I was terrified of what would happen if I did.
This psychiatrist meant well. This doctor knew that the psychiatric system we have is discriminatory against people with personality disorder diagnoses and actively excludes them. There are many people who would love, and are indeed desperate, to have their BPD diagnosis erased from their medical notes and for extremely good reasons. I know that many people are cast out from mental health services the moment their diagnosis changes from bipolar or depression to BPD on their paperwork. Many people attest that they received compassionate care when they had a diagnosis of anxiety and depression, only to be met with coldness and alienation once they had a personality disorder diagnosis.
Huge numbers of people with this diagnosis are offered no real help and end up in situations where health professionals are telling them that the issue is their 'personality'. On top of this, it seems that lots of people are misdiagnosed with BPD.¹ Although her telling me to keep quiet had good intentions, she made me feel disgusted with myself for having a condition that she told me not to speak about. I was reminded of friends who knew they were gay, but couldn't say for fear of being discriminated against and told to stay silent so as to avoid the harassment and the discrimination. I was angry and felt a burning sense of injustice.
But I was too scared for years to speak. Being diagnosed with BPD is not easy. First of all, the name sounds terrifying to a lot of people. It's not an easy concept to understand. Then there's the difficulty in accessing treatment. If you're offered any talking therapies (it is a postcode lottery), then there is usually a long waiting list which can feel unbearable with BPD's painful lows and terrors of abandonment. On top of this, on turning to the internet to find out about the condition, you are likely to come across some hideous websites, YouTube videos and even books which portray people with BPD as monsters who are incapable of having healthy relationships and leading fulfilling lives.
The months and years that followed my diagnosis were full of embarrassment and I felt constantly like a fraud because I was hiding my BPD. I become guarded and even paranoid at times about my diagnosis. But, if a doctor who had studied for ten years to become a psychiatrist told me that it was better to keep it quiet, then surely she was right? I kept my diagnosis from GPs during consultations and when healthcare professionals asked me if I was taking medication, I told them my antipsychotics were for bipolar. It seemed much safer and easier to tell them bipolar than BPD and I have heard this echoed by lots of people with BPD who do the same too.
the invisibility of people with bpd
Then there's the difficulty with finding others with the condition. As it's a very stigmatised condition, not many people are talking about it. Chances are, you can name a person in the public eye who has talked about their depression, anxiety disorder, bipolar or eating disorder. But try to name someone famous who has spoken openly about having BPD and I bet most people are stuck. I have really struggled with having no one in the media to look at and see a positive story of coping. I am thinking of the amazing Nadiya Hussian who discusses her panic disorder, Stephen Fry who has made documentaries about bipolar disorder and writers like Matt Haig who write openly about depression. There is nobody so well-known in the media, the arts or another similar field, who speaks about their BPD who I can look to for comfort that I'm not alone.
I have a friend with BPD now, but I didn't for years. For several years, I was desperate to have someone in real life and not just online (as great as that was too) to talk to about BPD. My only way of finding someone was on Twitter. Back in the days when I was anonymous online, I asked someone who lived in a nearby city if she wanted to meet up for a coffee. Until that meeting, I had never knowingly spoken to someone with the same condition as me and doing so felt like pure magic. It was absolutely liberating and I have never looked back.
I think a lot of the time people with BPD feel they are the only ones because it really is hard to find others with the condition. I know that many people sooner will say they have anxiety, depression and bipolar, than BPD. I used to feel sick saying the words borderline personality disorder; the name made me feel so ashamed and I was terrified of being judged as manipulative, monstrous, dramatic, helpless, incapable, attention seeking, dangerous and a lost cause. More than anything, I think, I didn't want people to give up on me.
this is what a person with bpd looks like
One of the most damaging ideas is that there is a certain type of person that has BPD, or that the condition has a certain look. My DBT group has been populated by all walks of life, gender, social backgrounds, ethnicities and personalities. Some people in the group struggled with anger, shame, sadness and anxiety. There were some individuals who felt they were overflowing with emotion, and others who felt empty. What everyone in the group had in common was deep emotional pain, experiences of invalidation, of not having their internal experiences accepted and seen by people around them and a difficulty with regulating emotions, alongside painful and repetitive thought patterns.
In the past, I struggled to reconcile parts of my identity with my BPD, in particular my sense of self as a primary school teacher by professional training, as someone who has been a volunteer counsellor for a well-known listening line and someone who is valued as a great friend and family member. I felt for many years that I could not be these things as well as someone who has BPD. For many years, I thought the only way for me to be lovable was to no longer have BPD. I was wrong about this, and I was also incorrect to think that having BPD was incompatible with being competent, caring, kind, lovable, generous, strong, warm, loving and all the things I want to be.
Whilst for some people a BPD diagnosis has been demeaning and has a destructive effect on their identity and livelihood, for me my BPD diagnosis has been a glue that has held me together. I hold my BPD diagnosis close to my heart because for me it explains not just my sensitivity, but the immense pain I have lived through and which I sometimes feel. For many, a BPD diagnosis steals something that was never there for the taking and robs them of a nuanced story. For me, the diagnosis is a source of comfort because in it I find room for myself and for my story. I feel this is an unpopular and unfashionable opinion right now, but this is how I feel. As someone who has been denied the right to my feelings many times, I am going to claim this one as my own.
In summary
I talk about my BPD because still people with BPD are getting a raw deal; they are denied treatment as they are often deemed 'too difficult' for primary care and then the secondary services don't exist. There is a dearth of discussion about BPD in the media. When was the last time you saw a documentary on BBC about BPD? I have seen ones in the last year about depression, panic disorder, eating disorders, body dysmorphic disorder, PTSD and even schizophrenia (which too remains very stigmatised). It remains very difficult for many people to talk about BPD. The name doesn't help, for sure. Borderline sounds like something from a superhero film. To people who don't know much about it, personality disorder sounds, well, not great. The psychiatrist who diagnosed me with BPD probably didn't realise that I have a little patience for stigma and discrimination. It may have taken me several years to shake off my anonymity online and then start talking in my offline life, but here I am today and I can't stop talking. It is a very personal decision whether to talk openly about BPD. I feel more comfortable doing so and it's the right thing for me to do.
Footnotes
1. Note: I am not anti personality disorder diagnosis. What I am against is medical professionals who do not understand what personality disorder means and a system that discriminates against and often actively excludes people who are in enormous distress and who have often been through traumatic experiences. I don't believe that having a personality disorder means there is something 'wrong' with my personality. What I do think is deeply wrong, however, is professionals who are undereducated in personality disorders and a discriminatory system which perpetuates this misunderstanding. I also think the name personality disorder is hugely problematic and a key factor in the perpetuation of this stigma. The name needs a drastic rethink very quickly. I understand why there is a movement to remove the diagnosis of personality disorder from the DSM and although I am not necessarily in support of this, I think such movements have incredibly valid points, raise very important issues and that there is much the medical profession could (and should!) learn from them.]
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