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Mental Illness Awareness Month

May 21st, 2013 (03:14 pm)

So here’s a post I’m feeling funny about posting to LiveJournal. It’s about my experiences with bipolar disorder; I wrote it for Mental Illness Awareness Month. It’s from Facebook, and it was kind of a big-ass deal to me to post it there, because many of the people that I know/have known in “real” life -- particularly the ones who are really only acquaintances -- have had no idea that I’m bipolar. I kind of just came out about it to, well, everyone. And it feels weird.

On LiveJournal, however, I’ve been posting about this shit for years, so that I almost wonder if I should bother reposting this here. Ultimately I decided to because I put a lot of effort into writing it and I miss LJ and why not.

So, uh, here. This is the most up-to-date piece about my experiences with bipolar. Thinking about it logically I know it really isn’t totally redundant with other things I’ve posted here, because my experiences have evolved. (Dude, I do not know WTF happened when I turned 30, but all of a sudden shit was going DOWN.) And... yeah. Here’s my thing. It took a lot of something or other to write it.

Incidentally, one kind of eyerolly point: I think almost every (longitudinal, not isolated) post I’ve made about bipolar has ended “but I’m better now yay!” And the problem is that very often I really have not been better. Oh, at the times that I’ve posted I’ve almost certainly been better than I was at other times. I wasn’t posting out of the depths of bad episodes or whatever. But I think my entries have tended to have a tone of “I have PUT PAID to this bipolar business by means of HARD WORK AND MEDICATION!” And I would do this without ever realizing how depression had invaded all the crawl spaces of my life, taking over everything, until I couldn’t really see it because it was everywhere, it was where I was living. So, yeah, this is another retrospective piece that’s like “I wasn’t okay all those times I said I was okay but now I am!!!” But the thing is... it’s true this time. Seriously. I finally got some decent treatment after years and years of my treatment being sub-par, and looking back over the bad years I can see what both I and my treatment team were doing wrong, so I can get that stuff fixed when it turns up. Which it mostly doesn’t lately, because seriously, I think my prescriber is kind of a wizard. But... yeah. Things really are better.

So here is the post.

It’s Mental Health Awareness Month, and I’ve been trying for weeks to come up with a post about my experiences. It’s been weird to write and may be weird to post, but I think it’s important to do it. So, here.

I have bipolar disorder -- diagnosed in college, just about 13 years ago. It’s bipolar I with psychotic features, specifically, which is a pretty severe version of the disorder. And some of you know this and some of you don’t, but I don’t think I’ve ever gone public under my own name about what the experience of bipolar is like. And I think it would be good for people to understand, and I’m in a place in my life now where I can speak out. So -- this is what bipolar disorder means for me.

I’ll start with what is generally considered to be the hallmark symptom of the most severe episodes: psychosis. For those of you who don’t know, psychosis means aural and/or visual hallucinations and delusions. Psychosis for me means entering a strange world where shadows fall in the wrong places and walls breathe and tilt and move. Psychosis means hearing voices talking to me out of radiators, showerheads, birdsong, my own head. Psychosis means seeing cameras in telephone poles and believing my window fan is a dear friend. Psychosis means things take on weird shapes, bunching and expanding and sliding across the room. Psychosis almost always hits me at night, and this makes sense to me because it seems to grow out of the darkness. Psychosis plays its tricks from shadow-laden corners of rooms leached of color. Psychosis is kind of creepy, but I’m lucky: for me, the character of psychosis is pretty innocuous. The radiators tell me everything will be all right, the voices in my head have interesting conversations. And psychosis for me can be knocked down easily by antipsychotic medication, so psychosis itself isn’t a huge worry for me. What worries me is that when it starts showing up, it means things are in a pretty dire place, skidding way out of control. Psychosis means full-blown mania with horrible mixed state coming soon. Psychosis often means psychiatric hospitalization. Psychosis is a very bad sign.

Mania means different things. Mania generally starts with hypomania, which is super exciting and mostly super fun. All the energy! All the happy! All the wonderful! Hypomania means everything is bright bright sunlight, the kind you really should be wearing sunglasses for, but isn’t the sun a miracle? Hypomania means you can look at that sun without burning your retinas... or without noticing that you’re burning them. Hypomania is dancing around, exercising, happily running all sorts of errands, then coming home, doing all the chores, and redecorating the house. Hypomania means talking really fast and having precisely the words you want at the tip of your tongue every moment. Hypomania means making long lists of all kinds of random things and hypomania means creating elaborate systems of behavior to ensure that everything stays in control this time. Hypomania means actually thinking those systems will work. Hypomania means not being able to slow down and serious-up enough to carry on empathetic conversations with anyone who is not hypomanic, but oh well. And hypomania means writing. A lot of writing. Real writing, sharp creative writing with a fluency of thought association that leads to vivid, surprising imagery. When I’m stable, I know that every other aspect of hypomania is unhealthy and not something that I actually want, but the writing... I want the writing back.

Anyway, if it isn’t knocked down, hypomania turns into full mania, and that’s not really so fun. I mean, sometimes it is -- euphoric mania! The world has never been so startling, so new, so bright, so amazing! -- but the manic energy can flip over into a supercrazy anxiety called “mixed state” just as easily, and then, man. Mixed state is all the energy of mania and all the worst parts of depression. Ruminating ruminating ruminating at warp speed every second about how I’m the most terrible person ever and I’m ruining the world and the world is ruining me and my brain is screaming and shrieking and battering against the inside of my skull in pure terror. Mixed state is the worst thing I have ever experienced. And whether it’s mixed state or not, mania means never sleeping and often, as noted, it means psychosis in the darkness.

But mania, again, can be knocked down with antipsychotic medication. It might take awhile, I might spend a week in a psych ward having my meds reworked, but it’s never lasted longer than a week for me, and it really doesn’t happen often.

And so there’s depression. And depression is not easy to medicate in a bipolar person -- well, in this bipolar person, anyway -- because antidepressants tend to cause mania, and so you have to be really careful with them. Some doctors won’t prescribe them at all for bipolar patients. The thing about it is that while depression is far more life-threatening than mania -- people kill themselves when depressed -- depression *looks* a lot more sane than mania. So -- in my experience, anyway -- doctors will work hard to medicate you out of the possibility of mania, even if it leaves you severely depressed, trying to lift a large boulder off your chest with weak arms and no help from anyone. I lived for ten years in a default state of depression, and it’s only looking back on it that I fully understand how torturous it was.

I can only speak to my experience of depression, as I know different people experience it different ways. (The recent Hyperbole and a Half post testifies to that; Allie Brosh’s experience of depression is heartrending, but it’s really not my experience.) So, for me, depression means that it takes as much energy for me to get out of bed as it does for a non-depressed person to vacuum their entire house. Depression means being afraid to do anything because I’ll fail and everything will be even worse than it is now. Depression means thoughts running in a loop of how awful I am, what a burden I am on the world, how I was born broken and useless and therefore owe it to the world to remove myself from it. Depression, of course, means thinking about suicide a lot. It means some minor self-injury. It means sleeping like fourteen hours a day and it means a phrase I ran across on the bipolarowl Tumblr once: “I’M NOT TIRED / I JUST WANT TO BE ASLEEP.” Yearning for sleep, yearning for the world to go away. It’s... God, I can’t even begin to list all the awful things it is. It means so so so much self-hatred, every second of every day. When it's severe, my depression means not being able to write a single word. And the most difficult part about it is that I think everything is normal. Personally, I don’t present as particularly depressed when I’m out in the world; Kerianne sees the worst of me, but most other people don’t. I might seem cranky or tired or anxious, but people can’t see the awful things going on in my head. Meanwhile, I know all the awful things that are happening in my head, but I’m usually convinced that they’re “situational” instead of medical. The problem is the “situation” that I think is going on is that I’m a terrible person who just can’t get her shit together and do the things she’s supposed to do, and if I weren’t so terrible I wouldn’t be depressed. I have actually managed to convince doctors of this -- that my “situational” depression is caused by the “situation” of my not being able to do anything happy or healthy. How can a psychiatric professional not understand that it goes the other way around? I don’t know, but it kept me in needless misery for about three years, as one particular doctor latched onto that explanation and even used it to explain to me why I didn’t need psychiatric hospitalization even though I was self-injuring and thinking about suicide all the time. “The hospital wouldn’t take you,” she said about thirty times. This turned out not to be true, finally. Oh well.

I did eventually get psych hospitalized. I’ve had five psych hospitalizations. I feel like I should get into that too as not many people know how such things work but damn, writing this post is exhausting. Maybe I can give a sense of things by saying that the hospitals have ranged from very very bad to very good. In the worst one they did literally nothing for me -- no meds, no therapy, nothing -- except make me listen to the screams of my geriatric roommate when she didn’t want her diaper changed. At the mediocre ones they tend to have group therapy sessions that are stupid and then an arts and crafts table where I spend most of my time. The best of the hospitals -- this was a satellite location of the famed McLean, not the crazy-writers one in Belmont (more’s the pity) but a linked hospital in Brighton -- had staff who were totally on the ball and who changed everything for me by making really good changes in my meds.

Meds. Jesus, all this stuff. Meds, again, run the gamut, but unfortunately for me most of them have been in the really-bad to pretty-bad scale, so it took a long time to get things straight. Meds have taken away my facial expressions, a precursor to tardive dyskinesia, and have caused me to gain almost a hundred pounds (If you knew me in high school and were wondering what happened to the size-three girl from then to make her into the obese girl in my current Facebook photos, that’s what happened. Antipsychotics happened.) They’ve made me unable to render a grammatical sentence at the level of basic syntax, and they’ve made me throw up every day. They’ve made me depressed and they’ve made me manic. And now... they’ve made me sane. They’ve made me well. I am doing well now and to me that is not far shy of a miracle.

Incidentally, there is something I want to make very very very clear about my experience: my mental health is almost entirely medication-based. I know, I know, I just told you all the bad side effects many of my meds have had, and they were awful and I’m certainly not out to try to convince you that all meds are good for all people all the time, because come on. But finally I got hooked up with some doctors who take me seriously and know what they are doing, and it’s just... it’s made me well. I’ve been out of talk therapy for the last year and I’ve been better than I’ve ever been since this disease descended on me, because the problem is my brain chemistry. I hear people going on about how depression is about things you need to work through, and how meds aren’t good for people and certainly never outright necessary for them. I once nearly left an outpatient psychiatric program because one of the counselors kept going on and on about how all moods are the result of needs being met or not met, and the only goddamn need I have is to have non-broken brain chemistry. I need to emphasize this and emphasize it because I am not kidding myself and I am not taking the easy way out and I am not refusing to deal with my issues. *My brain chemistry is fucked up.* Do I have issues I could deal with in therapy? Absolutely. I’m trying to find a talk therapist now, because I have stuff I’d like to work through. But the stuff I need to work through isn’t depression and it isn’t mania, because I am neither depressed nor manic at the moment, and that is because my meds are straight. If you are reading this, please please please don’t go around telling people, or the world, that meds aren’t the way to go or that meds can’t fix it all. I know that for some people that’s totally true. For some people meds are only a partial cure and for some people they’re no good at all. But for some people meds are the only way to go. Unless you are a professional working with the specific person you are talking to, stop trying to tell other people what their experiences really are and how you would fix them. You don’t know. Stop it. Please.

So anyway -- now. Now I am doing really well. I have energy. I go to work and I actually do my work. I go out in public and socialize. I am writing. (Again: a miracle.) And are things perfect? No. Intermittently, I still have a (very dialed-back) problem with pervasive thoughts about how I am not a good person. I went to a party a few weeks ago where I was so overwhelmed and cranky and upset that I seriously considered hiding in a closet the whole time. I have down moods and I have up moods -- the up moods I can knock down with medication; the down ones I kind of have to just live through and call my doctor if it gets too bad. But all of that stuff -- I can’t express how tiny it is next to the juggernaut that my illness used to be. I feel happy about my life right now.

For almost a year after the McLean hospitalization turned everything around, I thanked God every day for my mental health. Not as a deliberate gesture; I just never went through a day when my mental health didn’t surprise and delight me. I thought I’d never go through a day when I wasn’t aware of that surprise and delight. I thought every day for the rest of my life I would have a moment of pure gratitude. I thought I would never ever take it for granted.

But recently I’ve started taking it for granted, just a bit. It doesn’t occur to me every day to be grateful. And that’s something I have to work on, because mental health is absolutely not something to be taken for granted. I work in downtown Boston and every day I walk past at least three people scrunched down on the sidewalk with a laundry cart full of odds and ends next to them, muttering or yelling or just staring. That could have been me. There but for the grace of health insurance, a good support network, and a lot of luck go I.

I should be grateful every day of my life. I should remember where I was and where I am now. I was ill and now I am well. I wasn’t okay. Now I am. I am okay.

And I am very lucky.