as small as a world and as large as alone

3:14am January 29, 2012

soilrockslove:

TW: Mental health bigotry

bittergrapes:

goldenheartedrose:

to-this-nature-so-unnatural:

massacregoddess:

the-unpopular-opinions:

anon please

SOME MEDICATIONS MAKE PEOPLE ZOMBIES. HOW DOES THAT MAKE THEM A HEALTHY, PRODUCTIVE PERSON? I AM TIRED OF THE ASSUMPTION THAT MEDICATION IS EQUATED WITH *GETTING HELP.* THAT IS ONLY PART OF SAID PROCESS OF ‘GETTING HELP.’
Many people with mental illnesses can function without meds, but with talk therapy, etc. Get your shit straight, kthnx.  

[Content: Suicidal ideation, self-injury]

No one is REQUIRED to take meds. In fact, some people can’t AFFORD THEM. It doesn’t occur to you that some people cannot afford help AT ALL. Pills and therapy? They cost a lot on their own, and combined, they’re very expensive. Pills help a bit, and while I’m not against pills completely, they’re not the cure to everything. 

I took an SSRI (Lexapro) to help control my compulsive skin picking. In the process, it helped rid me of some anxiety. But I had to stop. The fact is, feeling like a robot was making me suicidal. For me, boredom is what breeds depression. I went off meds for my own mental health. And when I took Paxil as a child? Those pills made me suicidal. I was taken off of them by my parents because my life was in danger.

I don’t expect that I’m making much of a point to you, but you can go ahead and choose to be ignorant, or you can take something away. This is NOT an issue that you can paint in black and white. In my experience, it’s been very hard to find a medication that makes me feel like myself, and YES THIS IS A PROBLEM.

Holy shit, ableism and classism. I’m going to make the assumption that the op doesn’t know what it’s like to walk in another person’s shoes. I have GAD, and while I Am grateful that I can afford meds, I have found other ways of dealing with it that won’t turn me into a zombie.

Going on medication made me lose two years of memory because the doctors kept changing my dosage/prescription every several months. THERE ARE TWO FUCKING YEARS OF MY MEMORY MISSING THAT I WILL NEVER. FUCKING. GET. BACK. because of medication.

I don’t want to go through that again. I don’t want to go through the anxiety attacks and the lethargy and the weight gain and the total loss of energy and creativity. Okay? Writing is my fucking LIFE. Without it I might as well just not exist. Writing is my profession, and once I get out of school it’s going to be the only thing that makes me money. I cannot sacrifice that. Don’t tell me that’s something I should just fucking “suck up”.

Fuck you, OP. You have no idea what it’s like to live in someone else’s shoes. You have no idea what it’s like in someone else’s life. Medication isn’t for everyone. Medication wasn’t for me, and there are plenty of other people like me who had serious, irreversible side effects/damage from medication, and who don’t want to try that again. Go fuck yourself.

Also:  “No one is REQUIRED to take meds”  is not true.  If you are in an institution/hospital it is definitely not true.  And for some people it’s a requirement to keep from being thrown in institution.

Some people feel and function better on certain meds and have a hard time getting them through insurance.  And that’s an issue.  But informed consent is in no way the norm when it comes to mind-affecting medication.

Oh yeah, and Getting Help =/= medication.  Going on meds vs. not getting any help and pretending everything’s normal is a huge false dichotomy. >_<

Oh geez I loathe all the assumptions in that image file.  (This post is both about that and about some of the discussion.)

What “not feeling like yourself” means

As far as not liking how meds make me feel?  How would you (the OP) like it if you suddenly felt like your brain had been broken, violently, into little pieces. Little pieces that can’t talk to each other.  Pieces ripped in ways that went against the grain, not splitting in the logical places. All your thoughts. All your feelings. All of them spread out over distances you can’t follow. Moreover, there is a thick rubber wall between yourself and the world.  You can’t move across it.  You go to do things and you can’t do them. But you feel like you could do them because the drug mangles your ability to judge your own abilities. (Like the damage report system being damaged. It’s less funny in real life.) So you put all this energy into trying to do something. And it can’t work. So instead it goes into your arm which beats your head hard over and over.  

Your jaw is clenched so tight that you can feel your teeth grinding until you feel little grains forming in there. Your neck is twisted at an angle that causes severe pain. Your limbs are so stiff that even if you know how to wash yourself your body can’t do it.  You also can’t get yourself out of bed, also due to a painful level of stiffness.  Your hands shake so much you can’t write.  Parts of your body have these weird repetitive movements you can’t even feel. 

You have all these horrible, half-formed emotions. Everyone thinks you’re calmer because of the medication making your face too stiff for expressions. But really there’s this weird restless agitation. And all those pieces of you that have drifted so far apart?  They’re meant to be close together. When they are that far apart, things outside you affect you in ways they shouldn’t, like they’re getting in the cracks. Hard to describe if you’ve never been there. 

Sometimes you get these awful physical feelings throughout your body. It’s like something crawling inside your bones.  It compels you to move as much as possible, as extremely as possible. Whether it’s running back and forth, waving your arms around, or even becoming violent towards other people. Sometimes you body slam walls.  But nothing ever fully gets rid of it. 

You also can’t concentrate worth crap. It’s hard even maintaining a true interest in anything. Ever. You may end up sleeping over 20 hours a day. You may also have seizures, especially if you’re epileptic to begin with.  You can get serious heart problems. I’ve experienced all these things and more just on one particular class of meds. 

But I get the feeling you don’t even know what “not feeling like yourself” even means. It’s not like you don’t feel like yourself when you’re sleep deprived or stressed or having a really bad day. It’s like having the core of who you are ripped to shreds and then scattered in the wind.  And I, being particularly sensitive to neuroleptics, can feel that way on a teeny little nausea-treatment dose of Phenergan, the mildest neuroleptic out there. The ones they usually use for psychiatric use are both far more potent and in larger doses.  In my case, due to both allergies and a parkinsonlike movement disorder, there really is no way to safely give me a neuroleptic. 

The other fun part is how neuroleptic side effects can stay with you after you’re off them. In fact being on them can mask the severity of such side effects until you go off them. My tongue is pretty much permanently in motion and if I get tired enough it will try and stick itself outside my mouth.  Being tired enough can also bring on other movements.  I haven’t been on psych meds since June of 1999.  Most people hear about that side effect, tardive dyskinesia. They have not usually heard that tardive dyskinesia is often accompanied by permanent cognitive losses sometimes called tardive dementia.  There’s also tardive dystonia, and tardive akathisia (as opposed to the acute versions that go away when you stop taking it). So there are several motor and cognitive side effects that are caused by brain damage, sometimes even visible to the naked eye on an MRI. But I suppose you think I should just shrug off brain damage too?  Tardive dyskinesia can even become life threatening if it affects breathing or swallowing muscles.  I generally don’t like the way some people portray these things (and hence disabilities like mine that resemble them) as the end of the world. They’re not. But they’re also not situations that should be forced on people who don’t want them. 

And that’s just neuroleptics!  Do you want to hear all about what lithium does?  How you can overdose fatally on barely more than the “therapeutic” dose?  Organ damage?  Fucked up sodium metabolism?  Severe dehydration?  It’s lots of fun.  And don’t tell me all meds have side-effects.  They do but the danger level varies. I would rather take an aspirin than a neuroleptic. Barring my particular drug allergies, I’d rather take a neuroleptic than lithium or prednisone. There’s side effects and then there’s side effects. 

Then there were the antidepressants, which at best, for me, removed the immobility of depression without removing the suicidal thinking. Suicidal and mobile and impulsive are not good combinations.  Meanwhile, while I sometimes had good experiences with benzodiazepines, that was mostly because they made my seizures better which made my sense of the world around me more stable.  But varying the dose brought on migraines worse than any I’ve had since.

And you know what?  With some major exceptions (like “I feel fine so I don’t need this anymore”), if a medication is doing a good job, people will take it. Whether it’s psychiatric or otherwise.  If the side effects feel worse than the thing being treated, or the med isn’t even doing its job, that’s when people don’t want to take it.  In the rest of medicine, good doctors try to understand this.  It’s mostly in psychiatry that they get completely draconian if you don’t want to take something that makes you feel sick and miserable, and that may even cause psychiatric symptoms you wouldn’t otherwise have. So it’s really condescending to tell someone they ought to feel like total shit all the time because you’ve decided for them what’s acceptable.  Everyone responds differently and for some of us it’s a nightmarish experience.  

Psych meds and force

I was forced to take medications for several years.  If I did not take these medications, they did one or more of the following:

• Put me in a locked ward of a mental institution.
• Withheld really important freedoms from my life until I agreed to take meds.
• Tied me down and shot meds in my ass.
• Held my arms and legs down, stuck pills in my mouth, clamped my nose shut, and poured more and more water down my throat until I felt like I was drowning.
• Abused me in various ways and told me they’d stop when I took my meds.
• Told my parents to go out somewhere and dump me on the street and leave if I refused to take my meds.
• Tried really hard to convince me that psych meds are just like insulin for a diabetic and we all know what happens to diabetics who go off their insulin, right?
• Told me at great length what kind of nightmarish life they had decided that people who refuse meds all live like.
• Tell me that withdrawal symptoms and side effects only exist for people who have underlying mental illness that requires meds.

So basically there were no choices. If the lighter methods did not work they would try heavier ones. I tried running away from home several times but I was too unusual looking to get far before someone would call the cops to report a “disoriented person wandering” even when I was perfectly aware of my surroundings. If I hadn’t been white that could have ended much worse than the already-bad ways it usually ended.

The very worst attempt to force meds on me was when they had been authorized to shoot Prolixin in my butt. I resisted (if you’ve never been in an institution it may be hard to explain why even futile resistance gives you a feeling of being an actual human being) and they tied me down.  They let me up when they were done. 

I proceeded to have the single worst med reaction in my life.  I not only experienced such severe parkinsonian symptoms that I was rapidly losing all control over my body – I have a parkinson-like movement disorder already so even mild neuroleptics like used for nausea can fuck me up badly.  I also started having anaphylactic symptoms – tongue swelling up, throat closing, etc. 

They proceeded to carefully note the swollen tongue and the throat issue.  They used all the right terminology and knew exactly what was happening.  Then they did something very weird. They explained to me in great detail what a terrible person I was. Like how I was a total waste of space and resources. And then they slowly filed out of the room and went back to the nurse’s station as if nothing was wrong. 

Soon I couldn’t stand upright anymore and fell down right by the doorway. I was really struggling to breathe. A woman from the Visiting Nurses Association walked by and saw me. She said she was an asthmatic and she knew something was very off with my breathing. She hurried down to the nurse’s station, very close to my door at that point.  There was a loud argument and then they came down to my room very angrily and gave me a shot of something that stopped the reaction.  But if the VNA lady hadn’t intervened they would have been able to say I died of a reaction they hadn’t noticed in time. 

You would think that would be the end of this. It wasn’t. The next day they did the exact same thing to me. Again they noticed the reaction I was having. This time they told me I had a choice:  I could stop refusing to take Stelazine orally, or I could continue getting shots of Prolixin in the butt (which really meant I’d die). They refused to treat my reaction until I answered.  Only when I agreed to take Stelazine did they give me whatever med was stopping my bad reactions.  

Then they did something very strange also. They told me they were going to make me stay in my room all day because otherwise someone might see that my tongue was all swollen up, and ask questions.  I didn’t understand this until I received copies of my medical records a long, long time later. Rather than say that I got Prolixin twice and had bad reactions each time, they wrote that I had been started on a low dose of Prolixin, and the dose had been increased until I had a life-threatening reaction, and then it was discontinued.  They didn’t want anyone asking questions because that would have proven that they’d given me a drug I had a life threatening reaction to, after knowing I’d already had the reaction. And that would have been very awkward for them. 

So ever since then, it was always in my mind that they could kill me if I went off my meds.  (The nurses who did that were known throughout the place for being cruel and sadistic, so it was in character.  Everyone always tried to avoid pissing them off – to give you some clue, my body was often covered with bruises by the time they were done with me, but my parents were told it was self-inflicted and my communication skills – as in thought-to-words, not just generate-plausible-words – were pretty sporadic at the time.)  I made a few half hearted attempts to stop after that but always backed down fast.

Getting off my meds

So I was on them for a few years. By that time, I was starting to suspect they weren’t doing me any good, and were damaging my body.  I’d gotten into an “old lady who swallowed the fly” situation where a side effect of one med would be called an “unmasked mental illness” and medicated as if it was spontaneously occurring.  I stopped taking them slowly under the supervision of my psychiatrist.  Not everyone’s lucky enough to have a shrink who will do that. My shrink was well intentioned if sometimes clueless, and took meds himself that he’d stop some weekends to feel like himself again. 

It took at least six months if not a year for my body and brain to quit reeling from the shock of even a slow withdrawal from that many meds.  The whole time, professionals were going “See? That withdrawal symptom means you should go back on them!”  That is, until I ditched them all except my psychiatrist.  And even he told me there wasn’t much he could do for me – the underlying problems I did have either didn’t respond to meds and therapy, or were made worse by them.  

(Let’s face it:  Going to a psychiatrist to treat psychiatry-induced PTSD – or for anything else if you have such PTSD – just doesn’t work, and he was a decent enough person to grasp this. He’d witnessed a lot of the abuse I got in the system, and after the attempt on my life he mandated a VNA person to be in my vicinity at all times, so I think he knew something was up.  Most of the staff there hated him.  He was fine with diagnosing iatrogenic PTSD and letting me find my own ways of dealing with it.)

What really helped

Since psychiatry was incapable of helping me, I had to deal with things in other ways. Fortunately I had a very small but true group of friends who were willing to do way more than they had to, to help me out. Including spending the night or taking me to their places during times of crisis.  Most of them had PTSD from similar sources and helped me out a lot with that. 

I ultimately found that the solutions to that and any of the other large number of things I had going on, were things that I’d never encountered from any of the therapists I had growing up. (I saw my first one at age seven, so I had a lot of experience.)  It mostly has involved a very intense connection to the most real parts of the world (and trying to let go of as much unreality as I can manage), combined with a lot of work on… basically my own character as I move through the world attempting to be ethical.  That sort of thing isn’t ever over for anyone, whether they could be diagnosed with mental illness or not. But I have far, far fewer problems now than I used to.  

I am pretty certain – knowing the actual sources of most of my problems now – that if I had remained in the psychiatric system and managed to stay alive (given how many neuroleptics they use and how many bad reactions I develop), I would right now be a revolving-door patient with a boatload of diagnoses of mood, psychotic, and anxiety disorders, living in mental health housing if not homeless, and both miserable and good at making people around me miserable.  This is not an exaggeration. The vast majority of psychiatrists have no clue how to handle someone like me (and lots of other people like me), and the standard techniques for dealing with the problems I either had or appeared to have, make them worse. Much, much worse.  And they make me appear to have lots of other problems I don’t have and it’s a vicious circle. 

So literally the only possible good solution for me was to avoid psychiatric treatment or therapy, and avoid at all costs taking most psych meds. (I’m on a low dose of amitriptyline for a sleep disorder but that’s it.)

Unfortunately, for some reason, even the people I’ve seen online lately who have been in the psych system… a lot of them seem to be of the opinion that the only responsible way to behave as a mental patient is to take your meds and go to therapy, and in general believe pretty much what psychiatry says about the matter.  And a lot of them talk about the prejudice they encounter for taking meds. 

And like… on the one hand I have taken meds so I know the prejudice that exists and how real and nasty it can get. But I’ve also been off meds. And I know that the collective amount of shit I’ve gotten for not wanting to take psych meds or go to therapy is much, much worse.  I mean… “a mental patient off their meds” is supposed to be this terrifying thing in popular culture. And psychiatry itself rarely seriously fucks with people for taking their meds (it may fuck with such people in other ways, but not that one), but if you don’t they can do all kinds of horrible things to you. They can even get a court order to force you to take them. When’s the last time you heard of someone court ordered to stop their meds,?  It’s just not at all the same level of shit, at least under normal circumstances.  This isn’t some kind of “I’ve got it worse” contest, just wishing for some acknowledgement that what mental patients off our meds go through is awful and won’t be solved by convincing the world that mental illness is just like diabetes and meds are wonderful. Large portions of psychiatry already believe that, that’s why people like me get trouble. 

And since I can’t even ever tell my story without people making tons of assumptions:  I don’t mind people getting from psychiatry whatever good they can find in it, including meds and therapy if they really want them.  But I do think psychiatry needs to be completely overhauled and replaced by something closer to actual medicine/science and closer to helpful and not harmful.  In the meantime if people genuinely get something good out of what I consider a fundamentally broken system, I’m not going to complain.

Anyway, I’m writing all this because a lot of people seem to believe people like me don’t exist. We are actually everywhere, both inside and outside the system.  Inside the system, we’re often chronic patients getting worse and worse “despite” all the treatment we get, although we can be anyone. Outside, we’re often hiding to make sure nobody forces us back.  But we often do find each other nonetheless.  And people who think we were “just misdiagnosed and/or mild because real mental illness doesn’t work that way” seriously miss the point. (As in, the entire question of diagnosis vs. misdiagnosis is the wrong one to be asking.)

Another thing that has really helped me by the way. Is when everyone quit assuming that it was mental illness causing me not to be able to function. When it was realized that it was a combination of being autistic, having a movement disorder related to autism, having several physical conditions and severe chronic pain. Only then did my life actually start getting better.  I mean i was diagnosed with some of that already but it hadn’t entered people’s consciousness what that actually meant.  It worked so well because instead of hoping that the right combination of meds and therapy would make me able to do things I couldn’t do – instead, they got me help doing what I can’t do. And suddenly that made me able to better do what I can do, and removed several layers of things like desperation and starvation that were not helping my emotional state at all.  It strikes me that if people who had things like depression got the exact same kind of help, it would take the pressure and stress off that can make depression even worse.  But that too would require overhauling our entire attitude to stuff like this.

And people who think everyone experiencing certain things ought to “get help”, always through psychiatry of course… rapidly strike me as assholes, given what form that “help” can take.  And the problem isn’t “just not finding the right shrink” either. I had a great shrink, as shrinks go, but he had to admit he couldn’t help me and that most attempts to help me in standard ways had made me worse and made me develop symptoms I never had before all the “help”. 

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