[*Note: This post mentions suicide and self-harm, but in no detail*].
It shouldn't even have to be on my Christmas wish list, but, as a person with one of the most stigmatised mental health diagnoses, it unfortunately is. In summer 2021, the article 'Improving Attitudes Towards Personality Disorder: Is Training for Health and Social Care Professionals Effective?' pointed out that:
Health and social care professionals are more likely to hold negative attitudes towards people with a diagnosis of personality disorder than toward people with other mental health diagnoses. Negative attitudes have also been found to adversely impact care and service provision. (Attwood et al, 2021).
Being judged harshly or treated unfairly by some mental health professionals and services is not something 'all in my head'. There is a growing body of research into stigma by healthcare professionals towards people with BPD which contextualises, and affirms, individual experiences of stigma. One study on so-called ‘difficult patients’ in mental healthcare, for example, 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 (Koekkoek, van Meijel and Hutschemaekers 2006).
Such stigma leaves more than just a foul taste in the mouth though. It often leads to discrimination with real world impacts such as:
Fewer services for people with BPD than those with other mental health diagnoses, or no services at all
Lower quality of services for people with BPD than those with other mental health diagnoses
People with BPD being too afraid or demoralised to ask for help due to past experiences of being belittled, mocked or instantly dismissed by professionals
Being referred to (explicitly or implicitly) as an 'attention-seeker' or a 'drama queen' when trying to access crisis care, for example when suicidal or during times of self-harm
Over half (57 %) of people with BPD in an Australian study reported
that providers shunned them, compared with only 29 % of people with other mental diagnoses (Lawn, 2015). This is not just an Australian issue, I know it's happening in the UK and in other places around the world.
I've got first hand experience of stigma and discrimination on the basis of my BPD diagnosis, as I write about extensively in my book. I don't have enough fingers on my hands to count all the times I've been kicked out into the cold to fend for myself when I was suicidal, offered absolutely nothing when I needed completely everything and viewed as 'too clever for help', 'uncompliant' or a 'sensationalist, over-emotional teenage girl with nothing to cry about'.
Let me tell you how much the ensuing wounds hurt. Let me tell you the weight of this resultant trauma I carried. And then let me tell you how proud I am of my survival because I am alive. And how many years I spent trying to understand how all of this was allowed to happen to someone in so much pain. And finally— after years of eating self-loathing and self-blame for breakfast— knowing none of this was my fault. If you're in this situation, please attach the responsibility to where it belongs (clue: not yourself).
To have respect for someone can be defined as having due regard for their feelings, wishes, or rights. Basic respect is this at its most uncomplicated, unadorned level. Was there basic respect, when as a young woman I was suicidal and left for several hours in an A&E corridor, then a small room, without food or drink, all the while watched by a male security guard who would not even let me go to the toilet without following me down the corridor (I was not sectioned)? When I asked if I could leave to get a snack and a drink, he said not to leave and I was scared of the police being called if I did, so I stayed put with my hunger and thirst. I know that a cold snack and a small drink would have meant the world to me in that moment. I have too many anecdotes like this when really I shouldn't have any. This is my no means my worst treatment too, but it's Christmas and I'm not digging deep into my most painful stories tonight.
In case anyone is reading and is wondering what basic respect would look like for me in mental health care settings, let me give some examples. Please excuse me if my list looks a bit pie in the sky, but it's Christmas and if there's one time of year I'm allowed to dream this is it.
Relevant and safe treatment for my condition by a suitably trained professional
Timely access to treatment, not having to wait months or years when experiencing high levels of distress daily
Being notified when I'm coming off waiting lists
Having my treatment (medication or therapy), and any possible side effects or risks, explained to me
Being spoken to like any person without a mental health condition would be spoken to
Being seen as a person with skills, hopes, ambitions, potential and something to offer the world
Being listened to and regarded as honest unless I give you a good reason to not to trust what I'm saying
Having my suicidality and self-harm understood as expressions of emotional state and/or difficulties I am facing, rather than as character flaws or silly little whimsies
I am glad to say that I have had all of the above and more in my last experience of mental health care. I experienced this through my DBT therapist and the wonderful team in which she worked. In my next post, I will explore why and how I have trusted mental health professionals after a multitude of poor or traumatic experiences.
This Christmas, I ask that everyone—everyone!— who interacts with mental health services is given basic respect as a minimum (and ideally with all the trimmings). It's a shame I am having to ask, but many things go ungiven until we ask for them (or shout from the rooftops). I do think perceptions of BPD are changing slowly amongst professionals. There are certainly a large number of professionals who are pulling their weight to call out the stigma and dismantle the discrimination and this gives me some hope that one day I will have a Christmas during which basic respect is not at the top of my wish list.
Take care everyone and wishing you all a merry Christmas and a prosperous New Year.
References:
Attwood J., Wilkinson-Tough M., Lambe S. and Draper E. 'Improving Attitudes Towards Personality Disorder: Is Training for Health and Social Care Professionals Effective?' Journal of Personality Disorders, 2021; 35(3).
Koekkoek, B., van Meijel, B. and Hutschemaekers, G. (2006) ‘“Difficult patients” in mental health care: A review.’ Psychiatric Services 57, 6, 795–802.
Lawn S., McMahon J., 'Experiences of care by Australians with a
diagnosis of borderline personality disorder' Journal of Psychiatric Mental Health Nursing. 2015;22(7):510–21.
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