3:52pm May 10, 2013

More about depression.

This is in reply to something twocentsormore wrote on a thread that my tumblr client won’t let me reply to. Because my tumblr client sometimes starts arbitrarily only letting me reply a certain amount of times on a thread. And because I don’t feel like reformatting everything into HTML, this is what my reply was. It was a post about the way people’s ideologies get in the way when you’re trying to find a solution to depression, and may even tell you that you don’t have Real Depression if you resolved it in a way contrary to those ideologies. And other stuff like that. Go read their blog for a more general take on it. This is my very specific reply about my very specific experience. It’s not meant to be trying to talk people out of taking meds, if that’s what works for them. It’s just an example of what can happen to people, I can’t be the only one, when the meds really don’t work in a big way and they try to do something about it, and you get caught up in the explosion zone between every damn ideology about depression on the planet.

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I’m in much the same sort of situation twocentsormore talks about. I had real depression. Absolutely real, absolutely severe, absolutely terrible. I thought about suicide every single day for years, long after I stopped outwardly attempting it.

But therapy was never an option and meds were never an option. As in, they didn’t work. They both made it worse, for a whole lot of really good reasons. Especially, the meds had this horrible horrible thing they did. Where they would take away the physical lethargy that went with the depression, without taking away the actual depression. And this made them extremely dangerous for me. Because the lethargy was usually my best protection against suicide. I couldn’t kill myself because I couldn’t get my mind or body working well enough to pull off suicide. And the meds made me suddenly able to kill myself without removing the intent to kill myself. And they never, ever touched the emotional side, at all.

That’s not meant to be a statement about anyone else. Just a statement about myself. The fact that I even have to qualify that this thoroughly, speaks to a situation in which people still believe that the only way to have had Real Depression ™ is if meds and/or therapy worked for it. In fact, my reaction to both is extremely common, it’s not unusual at all, and it doesn’t prove you don’t have Real Depression.

But what really gets to people is that the ways I found out of depression are ways that I can’t even bring myself to fully talk about. But even the bits and pieces I do talk about. Which involved painstakingly, over years, changing bits and pieces of myself, over and over, without seeming to get anywhere, except the not getting anywhere was an illusion, and all that. All that. People don’t like to hear about. They assume I am telling everyone to do it that way. I’m not. They assume I did it because of ideological reasons. I didn’t. I did it because it was the only remaining choice left to me. I didn’t have the choice to use medications because medications didn’t work. I didn’t have the choice to use therapy because psychiatry was the source of severe PTSD for me, even if I’d been able to find a decent therapist, who are as rare as hen’s teeth as far as I’ve ever seen. I did the only things I could. The only things.

The whole time I was doing every damn path available to me, doing everything despite the overwhelming apathy dragging me down, fighting harder than I’ve ever fought anything in my life… People were constantly telling me I didn’t care enough. That I wasn’t trying hard enough. That I didn’t really want to get better because if I wanted to get better I’d do therapy and meds.

And I really hate to make comparisons. But I can make comparisons. Because I’ve been a very compliant psychiatric patient and I’ve had to go completely without any psychiatric help. And you do get shit for being compliant. You do get shit for taking meds. You do get shit for being in therapy. That’s real. I’ve been there. I know it. It’s bad. I know about being told if I was strong enough I wouldn’t do it this way. I know about close friends over-dramatically turning their heads away in utter disgust when they saw me take out my pill container full of anti depressants and anti psychotics and anti every damn thing under the sun that I was either deliberately taking or made to take with force.

But that was nothing compared to what I got when I was trying to go it on my own. For a long time, I wasn’t even allowed to go it on my own. If I didn’t take meds, people tied me to a table and shot them into me, often as violently as they possibly could. I could get locked up or threatened with being thrown out on the streets for noncompliance or refusal to take meds, without any other symptoms. I had doctors refuse to treat very real medical problems because if I wasn’t taking my psych meds then I didn’t care about my health and neither would they. I had doctors refuse to treat very real physical medical problems because they said “This is what you get for being crazy and going off all your meds, I’m not going to help you anymore, it’s all in your head.”

What I got when I was taking meds was serious asshole territory that could sometimes be abusive. What I got when I didn’t take meds was nonstop abuse and neglect, and nonstop threats of abuse and neglect, by people with loads and loads of power over my life. Worse, the mental health consumer community treated me like shit, shunned me, and condoned all the abuse and neglect because I scared them. I scared them because crazy people off their meds are noncompliant and scary and couldn’t possibly have real reasons for our behavior. I scared them because when I did show emotions, I really showed them in every movement of my body, not just by talking about them in serene therapy-speak. My stark terror at one point led to me huddling in a corner behind a television listening to an entire room full of mental health consumers talking oh-so-serenely about how “unsafe” I made them feel by being openly scared in public and not tiptoeing around my fear.

I ended up leaving because they were talking about how wonderful it was that they committed people from the grounds of their wonderful support group, for behaving in “unsafe” ways, and I realized they found me “unsafe” and that for a large number of reasons I won’t get into here, I could die if I was committed. I was really endangered there (my life was at risk), but they were the ones who went on and on about how they felt endangered just because I was around. I never, ever hurt a single person even a little bit the entire time I went there. I saw other people much like me being treated the same. Very few people spoke up on our behalf, it was assumed that we didn’t know what was good for us because if we did we’d be taking meds and be in therapy and stop showing emotions on our body and start talking about them out loud instead. There were a lot of class, race, and disability dynamics that made it much worse to some of us than others. And the ones who refused meds and therapy for all kinds of good reasons were always at the bottom of the pile and at the most risk for involuntary commitment without being a danger to anyone. Simply showing your feelings was enough to be considered dangerous.

So basically… Taking meds and going to therapy got me treated like crap by some assholes. Refusing to take meds or go to therapy, got me widespread, systematic abuse and neglect by psychiatry, by the medical establishment when it came to any and all non-psychiatric medical treatment. And worse. I got treated like shit by an entire community of people who should have been on my side, because we were all experiencing the same problems and all looking for ways to solve them. So I became isolated and endangered in a way I was never isolated and endangered when I was compliant. I am not saying things like that can’t happen to you for taking meds or going to therapy, especially if your family is all Scientologists or something. So there’s major exceptions. But in general, in the society I live in, crazy people who deliberately go off our meds and avoid therapy find ourselves in situations that… The other way around just doesn’t even compare.

Meanwhile, while there are psych survivor and ex-patient communities that are more welcoming to people who can’t or won’t do meds and other biological treatments (and contrary to popular belief, they often do welcome people who are taking meds), there were… different problems there. There was the insistence on certain kinds of therapy, that are outmoded and kind of scary. Because parts of those movements have been coopted by the kind of psychoanalysts who still believe that autism is caused by bad parenting.

And there was also the utter, terrified refusal to believe there was any such thing as any neurological variation whatsoever in the brain causing anything that might even slightly resemble a mental illness. The reasoning, I was told, meant that if anyone believed that there was any possibility for human beings to vary in how our brains worked, then forced drugging would be a reasonable thing and it would happen to all of us so any of us who even slightly believed in neurological variation were going to bring down this catastrophe on the rest of us.

Which gets extremely uncomfortable when you’re autistic, among other things. And surrounded by people who think that autism is an emotional problem that should be cured by intensive psychotherapy.

That was the other thing. They criticized psychiatry a lot when it came to medications. Sometimes accurately, sometimes I accurately. But they didn’t seem to want to criticize psychiatry at all when it came to therapy, and the abusive power dynamics present in a lot of therapy. They didn’t insist that you should be in therapy. But many of the community leaders created those same damn power dynamics that are present in the worst kinds of therapy, and considered themselves to be better than psychiatry, even though what they were doing looked just like the worst parts of therapy-based psychiatry. So I found it triggering to be within a mile of these people and their supporters. So that was out, even if they weren’t as dangerous and unwelcoming to me as the consumer community was.

And getting lost in these endless wars between biological psychiatry and psychotherapeutic psychiatry was the fact that I was a person experiencing severe mental problems who couldn’t be helped by either meds or therapy and needed help. I could have sorely used a community, but the dynamics of all available communities shut me out because they all put ideologies before people, and because the communities most closely tied in with the actual beliefs of current psychiatry were the ones most likely to actually endanger my life and for that matter my mental health. (And often such communities acted out the power of current psychiatry as well, even when they were supposed to be run by “consumers” and that was supposed to be different. It wasn’t. It was hell.)

And my general calling myself a survivor or an ex patient reflects the fact that the consumer community was extremely dangerous and had no place for me, so I could never even think of putting their name on myself. But it doesn’t mean the survivor and ex patient communities were that much better for me. And it doesn’t mean I hold the ideology held by many people in those communities either.

So here I was. None of these communities could, overall, help me. There was no big industry that could help me either, and no small segment of that industry I could hide in and use to help me. I had a psychiatrist and he knew he couldn’t help me, and was sometimes dangerous to me.

So what did I have? Eventually, friends. Other people who had been through, or were going through, the same things. And other people who were willing to help me. I didn’t have very many friends. Enough to count on one hand, maybe. But I had a tiny number and they were my lifeline. I don’t know how the hell they stood it, but they were the only support system I had during all this who were able to help me without endangering me.

One friend lived locally and was willing to come over or let me stay at her place if I was thinking too hard about suicide. Another friend would chat with me for limited periods of time online. Another friend talked on the phone, back when I had a complicated setup that let me use the phone with her without a massive headache involved.

And that was it. That was all I had. And I had more than most people have, who are dealing with severe emotional problems and who are unable to take any of the traditional routes through them. Being unwilling of unable to do therapy OR meds, pretty much puts you on the shit list of most of the mainstream mental health community, in a dangerous way, and as I said there were all the other ideological purity problems in the other communities that shut me out in other ways.

And there’s a lot more to this that I’m unable to tell you even now. Things that make it even worse. Things that put me in even more danger, things that isolated me even more, things I just have no safe way of discussing even today.

So I was able to claw my way out of depression. But it took having friends who had discovered ways out on their own. Because therapy and meds weren’t options for them either. And it took being desperate enough to trust people when what they said sounded impossible, felt impossible, felt like it wasn’t working for years on end because the depression obscured my view of the progress I was making. And it took them being there to catch me when I fell, explain the path that I couldn’t see in front of me, and assist me in all number of ways well beyond what most people are willing to do for other human beings in an age when there are problems considered “too severe for friends, you need to seek professional help”. But for those three friends, I might not be here.

There were others, along the way, of course. Many others. Some were friends and some weren’t. But those three were the ones who got me out of the worst of it, and did most of the heavy lifting. Two of them may never know how much of an impact they had, because we’ve fallen out of touch. I’m horrible at keeping up friendships, because I can only sustain a tiny number at a time, because some weird working of my brain involved in autism, so my friends have to be more patient than most people are capable of.

Anyway. Those three. Were all I had. And I might have had nobody but for luck. And that’s all because of the way ideology collides with reality. The most dangerous ideology to my very existence has always been the ideology held by psychiatry and those who go along with it the most. That’s the ideology that has resulted in the worst abuse, neglect, and threats to my life. But the main alternatives I’ve been given haven’t been much better. They have their own ideologies, their own idea of purity.

Without any guidance at all from people who had found the way out on their own, I don’t think I’d have found the way out. I can’t explain all the reasons why, but everyone involved is pretty certain I’d be dead by now, probably through some working of inpatient psychiatry, homelessness, medical neglect, or my own hand. I’m very lucky to have received the support I got from the people who gave it to me.

And what they had in common was they didn’t see me through the lenses of an ideology. They each saw me as an individual person. Ideology would have told each of them that I was beyond help, until and unless I embraced whatever brand of help the ideology said was best. These people knew I needed a way out that wasn’t any of the above. And they found me one, above my own objections that it was impossible and that I wasn’t going anywhere. Not that I objected to their trying to help. I just didn’t have much hope that it would work.

One of the horrible dangers of psychiatric ideology is the way it perverts the entire idea of help and hope. Psychiatry told me that it was the answer. That getting meds and therapy is what every responsible crazy person does, that believing you have an illness just like diabetes is what every responsible crazy person believes, that you don’t ever call yourself a crazy person because you’re supposed to say mental illness or neurobiological disorder or something along those lines.

What I found was eventually that there was no help, no hope for me within psychiatry. What I’d been told was that psychiatry was the last and only place for someone like me to find help and hope. I believed them. So when it became very clear that nothing they tried was going to work for me, I lost the last glimmer of hope that I had.

And that was the state I was in when my friends found me, and they had a lot of difficulty getting me out of it. When people say meds and therapy are the only answer, they have a lot to answer for. They are telling vulnerable people that if meds and therapy don’t work, which often they don’t, then there is no answer. That’s a very dangerous thing to tell a vulnerable person with severe mental and emotional problems. I understand that people repeat what they hear. I understand that people for whom meds and therapy have worked, may not even understand what happens to your hope when you realize that they can’t work. But when you take away hope, you can take a person one step closer to suicide. That’s a dangerous thing to do to a person. And people do it all the time without realizing it.

My guess is that there are hundreds of paths out of depression, but most of them are uncharted because psychiatry only tells you about a handful of them. And if that handful doesn’t work for you, well, you may as well not exist, or may as well not have hope, and you may as well keep trying and trying and trying the psychiatric-approved paths no matter how many times you bash into a brick wall.

Then there are a handful of paths out that people find as alternatives to psychiatry and if those don’t work either you’re really screwed.

And then there are tons and tons of paths that, if we don’t manage to kill ourselves, a lot of us have to find on our own. With small groups of people maybe at most. We find them because it’s the only option available to us. When we talk about them, nobody believes us. Worse than disbelief, some people see our talking about them as proof we need to be removed from them and put back onto the psychiatry-approved paths no matter how many times we say it is not working, even making things worse, even making it impossible to walk along the paths that actually work for us.

And there are paths we can’t talk about at all, because they step on such fundamental cultural taboos that we don’t dare discuss them except in whispers to other people who know about them.

And it’s those last two types of paths that have been the only ones that would work for me.

And I’ve gotten more shit for that, in more dangerous ways, than the entire combined lifetime amount of shit I ever got for taking meds or going to therapy.

That’s why nobody talks about these other ways out. They conflict with every ideology out there. And I do mean every.

So any community I’ve found that could help me had fewer than five members at any given time. And no ideology. And psychiatric treatment was out of the question.

And I wasn’t lazy. And it was real depression (and real PTSD, and real other things, some of which psychiatry doesn’t even have names for but are quite a lot as bad as the things it does have names for). And it wasn’t that I just didn’t care enough to give myself the right approved kind of psychiatric treatments. Or that I was just too crazy to see that that’s all I really needed all along.

I’m getting too tired to continue. But I hope I’ve made my point about the harm that ideologies can do, in terms of preventing people from being able to get out of the living hell that is depression. You described it in general terms, so I thought I’d be a bit more particular, rather than just paraphrasing what you said before. I’ve never been able to put all of this into words.

And so much of what I heard over the years was that this was all my fault. That I wasn’t doing therapy right. That I wasn’t doing meds right. That I was too stupid or too crazy to see what was right. That I had to keep trying the same old stuff long after it had stopped working. That it was better that I put my life in danger to try to cure depression in ways that had never worked and would never work, rather than find ways that supposedly didn’t even exist. If I’d believed people for long enough, I probably wouldn’t be here to tell you about what did work.

Unfortunately, I’m not all that able to describe the specifics of how I got out. There were many different things I had to do, and I had to do all of them at once. Some of them aren’t even supposed to be possible. But I’m here, so they are possible. There are far more possibilities that you will generally hear about, anywhere. Possibilities are good things. Especially when your entire life seems like a uniform grey mist in all directions.

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