The other week I was sat with a a range of people with different clinical and lived experiences of ‘personality disorder’. As is usual, the conversation weaved around the insult inherent in the term personality disorder and the help or treatment that can often only be accessed once that label is applied.
I think, if you wanted to begin a therapeutic relationship in the worst way possible, you’d ignore someone’s history, tell them they had a personality disorder then watch as all the stigma associated with that label is enacted upon them. It’s because of this I make a lot of effort (campaign?) for traumatised people not to be given a personality disorder diagnosis, for staff to understand people in terms of what has happened to them and for the world to recognise how survivors of abuse are shown huge sympathy until its decided they have a personality disorder and are then blamed for all historic, current and future problems.
When I’m fighting that good fight, it can feel positive. Standing with and for oppressed people. On occasion, it doesn’t feel so good. While we were talking the other day, someone who had been given a personality disorder diagnosis talked about how a ‘disordered personality’ really fit with how they understood themselves. It reminded me of another discussion years ago where, after I’d suggested we shouldn’t tell traumatised people their personalities are disordered, a voice rang out with “My personality IS disordered, thank you very much”.
So then what to do? I make an effort to ensure a lived experience voice is part of almost everything I do in work, so how to respond when a lived experience voice champions the idea of a disordered personality?
I started thinking about it a lot. Judgemental though it is, I felt that people “shouldn’t” think of themselves as having a disordered personality. I thought about how in the past, “Inadequate Personality Disorder” was part of our diagnostic manuals. When it was taken out, I think there were people who missed it, because they thought an inadequate personality really summed them up.
I thought about the history of homosexuality. Here it is listed in the DSM II
“302: Sexual deviations
This category is for individuals whose sexual interests are directed primarily toward objects other than people of the opposite sex, toward sexual acts not usually associated with coitus, or toward coitus performed under bizarre circumstances…Even though many find their practices distasteful, they remain unable to substitute normal sexual behavior for them. This diagnosis is not appropriate for individuals who perform deviant sexual acts because normal sexual objects are not available to them.
302.0 Homosexuality” *Fascinating that same sex relationships in prison are not illness but the day you step outside a prison they are!
Once again, I can imagine that at the time when homosexuality ceased to be viewed as an illness or disease, there were people who had been diagnosed who felt that this label summed them up perfectly. I think most of us can look into the past and agree we should never have told people that their personalities were inadequate, nor that the people they wanted to have sex with were determined by the pathology of their disease. A change was made for the better and their opinions didn’t count.
I genuinely think in the future we will look back aghast at how we treated survivors of abuse both in how we label understandable reactions to living through hell and with the prejudice and discrimination we knowingly unleash once “personality disorder” is written in someones notes.
So in the same way people with lived experience might have been ‘wrong’ to oppose their sexual orientation being viewed as an illness, are people who have been told they have a personality disorder ‘wrong’ to think they have a disordered personality?
I then got thinking of something else. Many people I work with have self esteem so low they could mine for lithium. They see themselves as bad, flawed, evil, selfish and cruel. Regardless of what cruelty, indignity or neglect has been inflicted on them by others, they have had the explanation that its all their fault (literally) beaten into them. When someone in a white coat comes along and gives you a label that confirms every single one of the worst things you’ve thought about yourself, it makes sense to me that you’d grab hold of it. At least it’s official now. A validation that everything you beat yourself for was true.
The problem is that this leads me to pathologising people in exactly the same way others do. “You only think you have a disordered personality because you are too hurt/damaged/ill(???) to see any different”. I then get a free pass to ignore everything I don’t agree with because I’ve been able to pop it into my “not valid argument” pile.
I weighed up all the above and didn’t know whether to say it out loud. I was picturing how crushed and invalidated I might feel if some professional responded to my honest opinion in that way. In the end with a lot of caveats about not wanting to invalidate, I did say it. It seemed to splash into the wider discussion without too many ripples but it makes me wonder for the future.
The categorising of personality disorder is changing. Mind have just put out their new information about Personality Disorder talking about how all the different types have gone. I hear on the grapevine that the next `DSM wont have separate categories. We won’t tell people they are medially a narcissist or a borderline anymore, just that they have a personality disorder. (As if the stigma and insult lay in the prefix rather than the ‘personality disorder’ description). At some point all the diagnostic manuals will change again and how much influence should those who feel their personality is disordered have over the changes? Total influence horrifies me, but no influence feels wrong too.
I have a fairly awful vision that people who are wedded to the idea of labelling natural responses to adversity as a personality disorder while ignoring the suffering that the label brings will latch on to those who feel their personality is disordered. That the foundation that all the stigma and discrimination is built on is justified because there are people that agree their personality is disordered. The problem is that I find this vision awful because I think I’m right and others are wrong.
The debate will continue and people who are in no way impacted by the stigma and discrimination will continue to argue that categorising distress differently will not make a difference. I often have very critical thoughts about organisations who only champion lived experience voices who support their narrative, but I was aware of how much I didn’t want to hear an opinion that contrasted so distinctly with my own.
I cant come up with a satisfying, line in the sand concluding paragraph here. I’m not going to stop telling the world we shouldn’t tell people who have lived through hell their personalities are disordered. There will be a bit of me that’s more aware of how insulting someone who believes their personality is disordered will find it if I don’t agree. I will say that much of my training has been around challenging the negative thoughts of those who mentally eviscerate themselves. It’s only in in the field of ‘personality disorder’ that it seems acceptable for professionals to agree with them.
As ever, all comments welcome but just as a starting point - there is not one treatment that we have for emotional dysregulation, recurrent suicidality, self harm, relationship difficulties or anything else that will only work if the patient and people around them believe they have a personality disorder. Not one.
*shared with the permission of the person who inspired it :-)