[This post contains references to self-harm and suicide, so please take care.]
Sometimes, the people who think they know the most about mental health actually know the least. At times, those whose job it is to help people in distress, say and do the most unhelpful (and stigmatising) things. The nurses who tell people to stop 'attention seeking', the therapists who describe behaviours as 'manipulative' when they are far from it, or the doctors who belittle and patronise their patients. It's not just me who has encountered the phenomenon of the unhelpful helping professional because I have talked to friends who have experienced this and have heard many people sharing this exact experience online too.
Let me share examples from my life. First, there was the nurse who told me 'don't do anything silly' as I walked out of her consulting room after talking to her about self-harm. Secondly, there was the psychiatry junior doctor who asked me about self-harm by miming cutting on her arm. Then there were the mental health nurses who saw me as a difficult time-waster and told me to get out of the emergency department. There are also the numerous medical letters and reports that describe me as the 'polite' and 'well-dressed young lady', as if my manners and my make-up mean anything about my mental state. Plenty of times, I have been had suicidal thoughts whilst wearing my best clothes with perfectly-applied lipstick and styled hair. Oh, and the support worker on the crisis phone line who said, quite earnestly, that I have 'nothing' to be suicidal about because I have family, friends, a degree, a job and a boyfriend. Just as an aside also, please can professionals stop making assumptions about sexuality!
I have seen people writing online about their experiences of being in crisis and saying that they have had more helpful and empathetic responses to their emotional distress from taxi drivers, transport workers and cafe assistants, than from medical professionals such as nurses, doctors, therapists and paramedics. I remember with gratitude the security guard who brought me a snack in A&E when I was effectively held in a small hospital room with nothing to eat for several hours. Of course, this is not everyone's experience and I know many people have had incredibly traumatic experiences of being met by police in very frightening ways and being handled in a manner that was painful, scary and traumatising. I have read about people receiving more empathy from the police that responded to a call out, than the clinical staff they later saw.
So why is it that sometimes non-clinicians respond with more empathy and sensitivity than clinicians? Is it because clinicians are hardened by constant encounters with human distress and immense pain? Is responding with stereotypes just easier when exhausted by constant exposure to human suffering? Is it down to a lack of supervision or space and time to recharge after a series of difficult shifts? Is it arrogance in that some clinicians think they know everything about their patients as soon as they walk in the door? Something else? I don't know.
Over the years, I have noticed that I often find it easier to disclose my mental health condition (and especially my experiences with feeling sucidial and self-harm) to people who don't work in mental health. Is it because of the above? Is it because I feel I have the chance to represent myself and recount my own experiences, rather than having someone who 'knows' about BPD from their work and trainings? It might be, I am not sure. Sometimes, the fact that a mental health professional is shocked when I disclose BPD says something about someone's preconceptions. People 'like me' can go through this. Because there is no 'us' and 'them'. The so-called 'sick' and the so-called 'healer' blur. And, to be honest, it is in that blur where the real healing happens. Peer support, has been, and always will be, one of the most valuable sources of support for me.
People with BPD are too often seen as the 'bottom of the pile', the 'worst of the worst' in some mental health circles, and it's not a thing of the past; it's happening today. Not so long ago, I saw someone on Twitter had tweeting about a therapists' group chat and how people with BPD were being talked about in the group with negativity and spite. Talk about kicking a person when they're down.
A 2006 study on so-called ‘difficult patients’ in mental health care found that patients with a diagnosis of BPD were judged more negatively by staff than patients with other diagnoses (such as schizophrenia) even when their behaviour was the same. Another study describes that mental health nurses 'belittl[ed] patients with BPD more often than than those with schizophrenia. A 2007 study found that nurses were more helpful to patients with major depressive disorder than those with BPD too. I know the reality of this, and it hurts. It really, really hurts.
I don't want anyone reading this to think that it is all professionals who think, speak and act in this way towards people with this diagnosis. It is not. However, I think it is important to know about others' experiences of stigma because it reveals that it's not a problem with you; it's a problem with the system and the culture. A system and a culture that does not fully support, understand, respect and empathise with people with BPD. The majority of people diagnosed with BPD are women. The reasons given for this vary and it's not to say that there aren't equal numbers of men with this diagnosis too- just perhaps that they are not being diagnosed. Also, whilst I am on the topic of gender, there is a dearth of research on BPD and gender variant and non-binary people. Can it be a coincidence that one of the most stogamtsied mental health conditions is one that is (arguably, along with conditions such as anorexia nervosa) has the most associations with women? I think it can't be.
I have had some fantastic care from medical and mental health professionals. Not least my warm-hearted, caring, empathetic and genuine DBT therapist of two years, who treated me as an equal, saw me for who I am and understood what it's like to be a woman right now. My psychiatrist of the last few years, who saw me as a person before anything else, and wanted to help me get out of this cage, not keep me locked inside. The GP who told me that I would be well-suited to working with children due to my caring, creative nature.
So, what to do if you encounter an unhelpful helping professional? That's difficult to say and I can only speak for myself. Sometimes I have tried to end the interaction as quickly as I possibly can and finish the assessment, phone call or appointment. There have been times when I have wanted to formally complain afterwards and I haven't because I haven't had the emotional capacity or energy to. Other times, I felt to complain would be fruitless so I didn't bother. Other times, I have not been able to make a complaint or stand up for myself because I wasn't aware that something was stigmatising at the time. Stigma has been central to my experience of BPD, that I kind of didn't know anything different. It made me doubt myself sometimes.
In my book, 'A Stigma-Free Guide to Living a Calmer, Happier Life with BPD' (out 21.10.21, published by JKP) I give more advice about coping with stigma and how to bolster your confidence when faced with stereotypes and unfair judgements. I hope the book can be helpful to some of you. Please know, no matter what, you are not a stereotype. You deserve respect, care, compassion, understanding. It is hard to feel and believe that sometimes, but honestly, you deserve nothing less. After everything you have been through, you really deserve nothing less.
- Rosie Cappuccino 02.02.21
References:
Forsyth, A. (2007) ‘The effects of diagnosis and non-compliance attributions on therapeutic alliance processes in adult acute psychiatric settings’, Journal of Psychiatric Mental Health Nursing, 14, 1, 33-40.
Gallop, R., Lancee, W. J., and Garfinkel, P. (1989) How nursing staff respond to the label "borderline personality disorder". Hospital & Community Psychiatry, 40, 8, 815–819.
Koekkoek, B., Van Meijel, B. and Hutschemaekers, G. (2006) ‘“Difficult patients" in mental health care: a review’. Psychiatric Services 57, 6, 795-802.
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