How did you feel when you were diagnosed with a case of the Mentals?

I’m doing a thing with Rethink tomorrow in which I talk about what it was like to be diagnosed with bipolar disorder almost…shit, 5 years ago. I know how I felt (incredulous, scared, confused, why-am-I-in-bloody-hospital) but how did you feel when you first got your diagnosis of bipolar disorder or otherwise?

(My diagnosis at the time was bipolar I disorder, which I remember thinking, “That sounds like a film. BIPOLAR I: THE ATTACK”. Not unlike, “BIPOLAR II: THE REVENGE”. Or, “CYCLOTHYMIA: THIS TIME IT’S…SORRY, WHAT WERE YOU SAYING? LOOK, I KNOW I WAS IN A GOOD MOOD YESTERDAY BUT TODAY, GO SCREW YOURSELF, YEAH? I’M GOING TO BED. FIRST, LET ME PICK UP THESE BISCUITS. YEAH, ALL OF THEM, SO WHAT? DO I JUDGE YOU? NO? WELL, SHUT UP THEN”.)

For me, it was a total kick in the balls. For everyone around me, it was a case of, “Oh, yeah, we knew that”. I’d been tentatively given that diagnosis before, but it’s changed, morphed and been so, “Eh?” over the years I hadn’t taken it seriously. Five years later, due to the changing and morphing, I still don’t take it seriously. What I did do was overidentify with it for a while (and then, four years later, distanced myself from entirely). I thought, “Oh god, this is the end of my life!” It was, in some ways. The end of a life I had known. I had to take…shit, four years?! out of life and then readjust. And recover, as now I am at the point where there’s not a sniff of mental illness about me, unless you looked really hard for it. I still have my tics and I still take medication. My life is different. I’m different. It’s part in growing up (a large part, I think). And part- well, it has to be.

The medication was the worst part of it. It was so frightening sounding, and the side effects were equally frightening. I struggled for years to take it, I resented that I had to.

In a way, I had expected too much from recovery. It has almost been lonelier than living with the actual illness had been. I expected that once I’d reached that point I’d open the front door and all the friends I’d known and loved and pissed off and frustrated and irritated over the years would be there brimming with forgiveness, ready to welcome me back into the world. It hasn’t been like that- it has been getting used to being this different, quieter, more careful person, and getting used to it on my own as I’m not the person those friends knew. For better or worse. There are things about me that don’t- cannot- exist anymore. The boundless energy, the sociability, the indiscretion, the emotionalness, the things I thought were part of me, were who I was, the things I realised that were practically parasitical. Those were things that DAMN! I would never have expected to happen.

There was relief, too, now tempered by not being sure (in that sense, I am jealous of people with a fairly concrete diagnosis). But I was undeniably relieved to know what ailed me, even if for 6 weeks after I fought with the home treatment team and said it was just depression and Lithium was kept in the top cupboard so my shortarse self couldn’t reach it. Christ. Five years ago. It may as well have been another life.

So, how about you?

The NHS Saved Me

I was encouraged to post this photo, so here I am, posting it.

I scrawled it on my arms at the Block the Bridge, Block the Bill protest last week, which, as other protests against steamrolled government policy, did not even give them pause for thought.

Working After Being Mental/Stigma

Hi chaps, here is some writing, elsewhere!

There are 2 things I’ve recently written floating about. The first is an article for One in Four on working post-mental-illness. (Which made it into the Guardian’s society daily, hooray!)

Working it out

After four years of treatment, three years on benefits and two interviews, I finally found myself one job.

I thought I’d never have a job again. My employment history is fractured at best. In attempting to work when I was ill, I made that situation and my health worse. Claiming benefits took a long time, but when I was finally successful, it gave me the space I desperately needed to get well. It gave me time, above all else. Time to sort out my housing, time to attend appointments, time to process what was happening to me and learn to live with it.

After three years receiving benefits, I realised I was no longer ill enough to justify claiming them. At the same time, I lost my entitlement to the support that came along with benefits and therefore lost all help toward getting a job. For the first time in four years, I was absolutely on my own. At that point, though, I felt that was where I was ready to be. Well, sometimes. At other times I almost crumbled with the fear that I wasn’t ready for work, that I wasn’t prepared for life without stabilisers.

And a piece with the mental health campaign, Time to Change, on stigmatising yourself.

used to be a very prolific blogger on the subject of bipolar disorder. That was, until I was diagnosed with borderline personality disorder. Bipolar disorder, through the visibility of sufferers such as Stephen Fry, could be construed as one of the more acceptable mental health conditions to have. It is associated with great creativity. Borderline personality disorder, however, is a less acceptable condition to have, if anybody knows what it is at all. It is portrayed in the media via the prisms of films like Fatal Attraction, with the terminally attached Glenn Close cutting her wrists as she waits for the disinterested Michael Douglas to call. Within mental health services, its image fares little better. In this study, 84% of mental health professionals said that people with borderline personality disorder were the hardest client group to deal with.

I hope you like them. And hooray for feeling able to write again! It’s been months!

How To Be Alone

This is an absolutely beautiful little video.  And close to my heart.  I spend most of my time alone.  The nature of living with a night shift worker means there are seven days in every fourteen when I am alone.  I don’t see people other than him so much.  Not much of a social life here.

There are times I feel very lonely.  That’s exacerbated by the internet- of having many connections but few with whom I truly connect.  With someone always on chat but never on the phone.  With 600 tagged photos of faces I never see in real life.  Sometimes I do feel very lonely.  I feel bad to admit to it.

But being alone. The older I’ve grown, the more I enjoy my own company.  I realise how much I value it when it’s taken away.  I get a little image of myself sitting here, drinking a coffee, being alone, and I yearn for it.  When I was working I was late home every day because I liked to look in the shop windows and run my hands through the vegetable racks and sniff the tomatoes.  I would rifle through my pockets for the change for tea.  6.30…7.30…head still in the paper.  I am used to getting looks for eating alone.  A £5 meze plate, my favourite treat, with just me eating and people taking my empty chair.  No, no-one is coming.  It’s just me.

In a way, I am halting about making new friends or polishing the friendships I already have because I like to be alone so much.  I like the space to think.  I feel bad admitting to that, too.  But I’m working on that.  I need to make the time for people.

Anyway, look, this is so lovely.

If you are at first lonely, be patient. If you’ve not been alone much, or if when you were you were not okay with it, then just wait. You’ll find its fine to be alone once you’re embracing it. We can start with the acceptable places, the bathroom, the coffee shop, the library, where you can stall and read the paper, where you can get your caffeine fix and sit and stay there. Where you can browse the stacks and smell the box, your not suppose to talk much anyway so its safe there. There is also the gym, if you’re shy, you can hang out with yourself and mirrors, you can put headphones in. There’s public transportation, we all gotta go places. And there’s prayer and mediation, no one will think less if your hanging with your breath seeking peace and salvation. Start simple. Things you may have previously avoided based on avoid being principles. The lunch counter, where you will be surrounded by “chow downers”, employees who only have an hour and their spouse work across town, and they, like you, will be alone. Resist the urge to hang out with your cell phone. When you are comfortable with “eat lunch and run”, take yourself out to dinner to a restaurant with linen and silver wear. You’re no less an intriguing a person when you are eating solo desert and cleaning the whip cream from the dish with your finger. In fact, some people at full tables will wish they were where you were. Go to the movies. Where it’s dark and soothing, alone in your seat amidst fleeting community. And then take yourself out dancing, to a club where no one knows you, stand on the outside of the floor until the lights convince you more and more and the music shows you. Dance like no ones watching because they are probably not. And if they are, assume it is with best human intentions. The way bodies move genuinely move to beats, after-all, is gorgeous and affecting. Dance till you’re sweating. And beads of perspiration remind you of life’s best things. Down your back, like a book of blessings. Go to the woods alone, and the trees and squirrels will watch for you. Go to an unfamiliar city, roam the streets, they are always statues to talk to, and benches made for sitting gives strangers a shared existence if only for a minute, these moments can be so uplifting and the conversation you get in by sitting alone on benches, might of never happened had you not been there by yourself.

Society is afraid of alone though. Like lonely hearts are wasting away in basements. Like people must have problems if after awhile no one is dating them. But lonely is a freedom that breaths easy and weightless, and lonely is healing if you make it. You can stand swaffed by groups and mobs and hands with your partner, look both further and farther in the endless quest for company. But no one is in your head. And by the time you translate your thoughts an essence of them maybe lost or perhaps it is just kept. Perhaps in the interest of loving oneself, perhaps all those sappy slogans from pre-school over to high school groaning, we’re tokens for holding the lonely at bay. Cause if you’re happy in your head, and solitude is blessed, and alone is okay., Its okay if no one believes like you, all experiences unique, no one has the same synapses can’t think like you, this be ?, keeps things interesting, lifes magic things ?, and it doesn’t mean you aren’t connected, the community is not present, just take back to you get from being one person in one head and feel the effects of it. Take silence and respect it, if you have an art that needs practice stop neglecting it, if your family doesn’t get you or a religious sect is not meant for you, don’t obsess about it. You could me in an instant surrounded if you need it, if your heart is bleeding, make the best of it, there is heat and freezing be a testiment.

World Mental Health Day: Stigma of the Self

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.