Today is World Mental Health Day, and m’colleague Mark Brown has written a piece for the Time to Change website regarding stigma:
Negative ideas about mental health difficulty and the people who experience it seem to many to be natural facts, ideas that we absorb as correct without ever being conscious of their source. They feel like common sense. When we’re asked where a particular negative idea comes from we can always find examples of how that idea has been used but very rarely the point from which it originates.
Often people use the formulation ‘Well, there are rules, laws and regulations about people with mental health difficulties doing this particular thing, therefore there must be a reason.’ If asked what they know about those who experience mental health difficulties, people will extrapolate from what they know of laws, rules and regulations. Examples of this include; ‘People with mental health difficulties must be dangerous or they wouldn’t lock them up in hospital’ and ‘people with mental health difficulties must be worse at their jobs or there wouldn’t be so many who are unemployed’.
But where do those ideas originate from and what’s it got to do with stigma?
A stigma is an indelible taint or mark placed on you by a community or authority that not only tells you that you’re wrong or undesirable, but also tells other people the same thing. As Catherine Amey writes in the winter edition of One in Four the idea of stigma is rooted in the wish to set a group within a society apart from others and to dictate how others should behave toward them. The word derives from the practice of branding criminals or other ‘undesirables’ so that they would carry a mark or scar for life to serve as a deterrent and punishment to the criminal and as a warning to others about their past. It was literally a way of marking people out as dangerous and to be avoided. As Catherine writes: “Stigma seems to serve a dual function: it protects people from individuals who pose a potential threat while saving them the trouble of thinking too hard.”
I posted this link on my Facebook page, and Phoenix Moon commented upon the idea of self-stigma. The one in which we hide ourselves. It’s not just having a mental illness that causes stigma. It’s which one.
As you may have noticed, my posts here tailed off last year. It is no coincidence that it was around the time my diagnosis had changed from bipolar disorder to borderline personality disorder.
Shameful as it is- and it is shameful- it was in part because I felt as though that diagnosis was a kick in the nuts, and people might view me differently.
The reasons were twofold.
One is that I did not personally identify as someone with BPD. I never had those shuddering, tipping-world realisations I had about BPD as I had with bipolar. After my periods of discussion with, “professionals”, it is generally agreed that I do not have BPD. I don’t have the, “core” traits such as fear of abandonment, emptiness, etc. But what I didn’t want to admit- what I didn’t even want to admit to myself at the time- is that I did. When I was younger, I did have those issues. Possibly not to the extent of a disorder, but I did have them. I did self harm impulsively. I did lose my temper a lot and I did hate being alone. I understood why the doctor made that judgement about me. And realising that I had had those problems meant I was able to face up to them. Those are the reasons why I couldn’t just off-hand dismiss the doctor.
However, the time passed, and it passed without treatment for those symptoms. I had either recovered from BPD, or it was a part of being young, or something else. Either way, it has such little impact on my life that I would struggle to write about it. But why then didn’t I continue with the blog in the same way I had?
The second was that I was ashamed.
I was fine with bipolar disorder, to a degree. That comfort with the label lessened when it became clear it was just that- a label, an interchangeable, fluid thing, not a solid fact in time and space. Not even a dust speck- not even that. It was not a part of me as an arm and a leg was, but I treated it as though it were. As did others.
But bipolar disorder comes with perks, if you can call them that. Anyone who has been in the system would contest it, because you are still treated like a mental patient. However, the perks are that you are treated as having a, “real” illness. There is sympathy there. You didn’t do anything wrong to get bipolar disorder. It’s like a nasty bug- ah, you’re unlucky. You must have caught it off your mum.
Culturally, we all know what the perks of bipolar disorder are. It has quite the glamourous image. Most people, when asked to think of someone with bipolar disorder, would call to mind Stephen Fry or some similarly artistic person sitting on a giant velvet pillow writing 10 books a day. When asked to think of somebody with BPD- if they even knew what that was- the image would be rather different. Think young, hysterical, self harming woman. (Guess which one vain, writerly I wanted to be?) Is that what they think of me, I worried? Is that what I am? Any of you reading this know the score with a personality disorder. It is the most dreaded diagnosis of them all. Your brain is not messed up- you are.
That was a horrible thought. I just wanted to crawl away. Gone from being a loud and proud person with manic depression, all shiny and visible and okay talking about it- to wanting to hide. I couldn’t bear the thought of being a public person who was thought of as messed up. Even in 3 years of blogging, I didn’t think anyone thought of me as, “damaged”. I didn’t feel that way about myself, either.
It also made me question things about myself I had not thought of. I had not thought that my dyeing my hair bright colours was some sort of sign of identity disturbance- it *was* my identity, I had been doing it since I was 12. I had also had an abortion prior to knowing my diagnosis had changed, and I wondered if that in itself cemented views about me. It was not an impulsive or blase thing, it was a serious and difficult decision two people who had been together four years made. I was distraught at the thought that it might have any weight in it. I was distraught and cried for days that no-one told me I had a personality disorder instead before I went through with it. The bipolar thing was a factor as I was terrified of getting ill when I was pregnant and I knew it was a possibility.
Navigating the space between was hurtful to me and led to a period of self questioning. As I wrote about at the time, the diagnosis change was not, “and (understandable to me)” but, “instead of”. If the professionals say it, well, it must be true! Because I didn’t feel I had BPD, but was also told I didn’t have bipolar, I had lost the language with which to describe my own experiences. I had lost the frame of reference I had used to explain why what happened to me had happened. And labels are, at the end of the day, shorthand. They are a phrase used to describe a cluster of experiences. In feeling as though I could no longer use that label with any- for want of a better word- credibility- I found it more difficult to talk about my experiences to the point where I am at now. As in, I don’t. Not to a doctor, not to a friend. I find it hard even here, in case the Really Ill people laugh at me. I used to private posts, but god, I do it 90% of the time now.
The long period of self questioning was one of the most valuable periods in my life. I’m Seaneen Molloy- I’d forgotten about that! Remember her? Short, silly and shy and would probably always be if not a manic depressive, or personality disordered, or Irish or any other of the vaguely meaningful but open to debate labels attached to me?
It is no surprise nor secret I do much better these days than I have ever done. It was partly because I had embraced the bipolar label too strongly. I think that that is partly natural- you do when you’re first diagnosed, it is how you make sense of it. I called everything an episode, when it just was. When I retreated, it was depression, not just that I liked being alone because I am too lazy to socialise sometimes. Necessary as it was to begin to deal with my problems, it was also crippling because it was all-encompassing. I had let it overshadow the flawed and silly aspects of my own humanity. Of which is complex and wonderful- like all humanity is. To dismiss it, to define it with one label is to do it a disservice. To realise it was just a label- that it was not concrete and did not exist anywhere except my medical records- gave me the freedom to move away from it. And thus to recover from it. When I was at first diagnosed with BPD I had those awful thoughts of, “What must they think of me?” I was wary of writing here in case it cemented that view. Now, I feel the same way about bipolar disorder. Bipolar disorder does “fit” better than BPD- those close to me, and myself, would find it hard to argue that now in the wake of being an Old Woman, the “episodic” nature of my issues is much more clear. But that is all it is- a word to describe those episodes. I sometimes wish that I could still confidently use that language because it explains things I find difficult to. But I should explain. They are MY experiences, after all.
The rediagnosis had changed my perspective- if that didn’t fit, then maybe bipolar didn’t. Or maybe it did. But what did it matter? It was just a word that gave a shorthand to my experiences, and not much more than that. It was a word that determined sometimes how I would be spoken to by professionals- but that was their problem, and not mine. Case in point- depending on which GP I’ve seen, my diagnosis is different on their screen. One GP sympathetically gave me the rundown on why taking medications was important due to my bipolar. The other asked me to roll up my sleeves show I could prove I wasn’t self harming (I haven’t done since I was 24 and then only once that year- I am 26 now) and then maybe I’d get the month’s prescription of the medication the previous GP had told me to take. When I was told it was BPD, I was urged not to be hurt because it was a label. When it was bipolar, it was an illness. So go figure.
My symptoms didn’t stop when I thought less of the label. I still have mood swings (to a lesser extent). I still struggle with cognitive problems. The way I dealt with them did. The confusing labels just made me think, “Right, well, they have no idea and either do I, so what do I do here?” I did what I knew worked best. I wasn’t sure what for, but it worked. Having regular sleep worked. Taking medication worked. Controlling my stress worked. And worked regardless of what label I had. Being too invested in one or other made me too invested in the fixes for either- when what worked for me, worked.
I was horrified at my own feelings about BPD considering I wanted to be a mental health nurse (and am now studying to be one). Was I going to be one of those bastards who referred to people with borderline personality disorder as a, “PD”? But part of my horror was the inbuilt prejudice against it. I had heard and seen enough that I was afraid of suddenly being one cast into the bin. I wanted to prove that I wasn’t- not because I disliked what BPD was (I think of it as a legitimate illness and in some cases an utterly rational response to trauma) and not because it was not entirely who I was, but because I was afraid of the prejudice that came with it. So I turned it inwards to deal with it. I would damn well work on the things that got me that diagnosis so I could escape the bin.
It isn’t fair. But what I found was is that the stigma was a motivator. The period of, “Well, then, what the hell is wrong with me?” meant that I came to the conclusion- nowhere near as much as anybody thought. I was not just better than that doctor thought- I was better than I thought. I had come further than I’d given myself credit for. I was stronger than I thought I was. And that was comforting, in a way. What was also important to me is that I didn’t change. From one diagnosis to the next- I was still me. So how much did it matter? It is also a motivator in never, ever becoming one of those bastard mental health professionals who treat, “PDs” like that.
That said, though, I still have issues with my self harm scars. The mass advice I get is to be proud of them because they are a signifier of how far I’ve come. I don’t view them that way, I’m not sure I ever will. It isn’t peoples’ judgements that make me want to cover up- it’s my own feelings. I hate looking at them- I hate being looked at. So how do you deal with that?
And now I have another issue! I’m a student mental health nurse. Not a, “real” nurse, as has been said to me twice so far. “Why would you want to get pissed on by mad people?” and other such lovelies. If the professionals are stigmatised, what hope do the patients have?
Answers on a very large postcard.
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