2:18am August 4, 2015

madeofpatterns:

it is hard to express…

just how much you can break someone…

…if what you think you’re doing..

..is making them into someone who might someday become a real person worthy of respect…

I had a psychologist once who openly told me that his goal was to kill the person I was, and replace that person, inside me, with a person who was more functional and better adapted to living in the world and less psychotic.

Note that ‘psychotic’, for him, encompassed ‘autistic’.  (He was part of a team who had diagnosed me, among other things, as having been ‘psychotic since infancy’.  Which can only ever mean autism, because there’s no way to diagnose actual psychosis in an infant.  They were taking their ideas straight out of Frances Tustin’s books from the seventies, that differentiated some forms of autism from others, and called some of it autism and some of it childhood schizophrenia or childhood psychosis.  I was supposedly psychotic since infancy and schizophrenic since adolescence, although what the difference was, I was never exactly told.)

He did not succeed.

But he did succeed in doing some incredibly scary stuff to the inside of my head.  I was unable to defend myself against the things he did, because I was heavily drugged and he was an accomplished manipulator.

I have been told since – by strangers online who know nothing about my life, mind you –  that I should’ve known it was impossible for someone to kill who you are and make you into someone else.  That if I actually believed him that it was possible, then there was something clearly wrong with me that needed to be fixed, possibly by the very guy who was abusing me in this fashion.

Of all of the abuse I encountered in the psychiatric system, this man’s abuse was the longest-lasting and most damaging in terms of consequences for my mind.  I remember going into appointments with him and feeling like I was an entirely different person.  Like I’d walk in the door myself, immediately turn into someone else the moment I saw him, and leave the door someone else again.  Often I wouldn’t be able to remember our sessions later.

He once let it slip that he’d been trained by a certain school of hypnotherapy.  Then he refused to name it again when I and my family asked about it, and got evasive whenever we brought up the subject.  I eventually found some stuff by the person, and it was someone who was considered highly unethical by a lot of hypnotherapists, because he believed in lying to patients if he thought lying would bring them around to healing in some manner, and he also believed in involuntary trance induction.  When I read about the ‘confusion induction’, it was exactly what this therapist did sometimes. 

And being on a very high dose of antipsychotics made it impossible for me to psychologically defend myself.  Antipsychotics can have an effect where they basically shatter your cognitive abilities, including your defenses against having your mind invaded.  By which I don’t mean like sci-fi telepathy sort of mind invasion, but more like extremely skilled manipulation.  If you can’t think straight, you can’t defend yourself well against people who are hell-bent on manipulating you.

But he was incredibly up front about the idea that he was going to kill the person I was inside, and replace that person.  He said also that he was going to get inside my mind and never leave.  And that if I ever had an original thought, I should bring it to him, because I would probably die if I ever thought for myself for very long.

I remember when a friend first taught me to repeat “I am allowed to think for myself.”  She said I needed to repeat it to myself over and over until I really believed it, and that it was very important that I do so.  I thought she was trying to kill me.  And at first, even beginning to try to repeat it to myself, resulted in this torrent of confusing brain noise that felt like I was drowning.  It was like he’d set booby traps all over my mind.

People don’t think this kind of thing is possible.

People are wrong.

I was first able to begin resisting this stuff when I found a book about cults, by a person who had been a cult member and had indoctrinated other people, and he talked in depth about how indoctrination works and how to resist it and remove it from yourself.  I had never been in a religious cult, or even in any of the other types of cults in the book, but the residential facility I lived at when all this went down, had a power structure that resembled a cult enough that the book was very useful for me.

I actually confronted him about it once, after I started reading about cults.  He told me that anything he did was warranted because if it wasn’t for him I’d have been in a state institution for at minimum the rest of my childhood.  Mind you, when given a choice between the residential facility and the state institution, I chose the state institution.  I was overruled both because people didn’t believe anyone in their right mind could ever make the choice I made, and because there were no beds open in the state institution. 

But having now talked to people who’ve been in similar residential facilities and in the exact state institution I almost ended up in, I have been told that the state institution was definitely better.  Not good, not good by a long shot.  In fact, terrible.  But better.  State institutions don’t usually have the money to throw around for intensive one-on-one 24/7 brainwashing.  Which is why many actual patients prefer them to private institutions.  Not all patients, and not all institutions, but it’s a preference that occurs often enough, and goes against what most people consider common sense, that it’s been explicitly noted a lot in the psychiatric ex-patient movement.  Unfortunately, that preference (and, in general, preferences for places seen as “worse” from the outside for reasons that are largely aesthetic) is often seen as evidence that we lack sanity and should not have control over our lives. 

Of course, most of us would prefer no institutions, but when given a choice between different types of institutions, we’ll often choose ones considered “more restrictive” or “worse”.  Because our definition of what makes a place worse – as patients, who understand certain things instinctively that other people don’t understand – is often very different from what staff or family members consider worse.

So this idea that he was keeping me out of a state institution doesn’t hold water to me at all.

The idea that he did this for any reason other than his own amusement and power tripping, doesn’t hold water to me at all.  He was someone who got off on power and control.  Not someone who inadvertently misused power, but someone who craved power and misused it to do harm to people, and often enjoyed doing so.

He also told me that he really enjoyed being able to treat me, because normally people like me were stuck in state institutions and out of his reach, so he didn’t normally get to “work on” anyone like me.

Which was a creepy-ass thing to say.

I learned later that even in psychotherapy that is not deliberately sadistic, there’s a frequent idea that you have to destroy who someone is and replace them with someone more functional. 

So I was not imagining that he said this, and the fact that I believed him capable of doing something he kept threatening to do (when he controlled every aspect of my life, too, which can undermine anyone’s sense of reality), does not mean that I “had to have been crazy” and therefore that what he did was somehow okay.  (Why is it okay to do that to crazy people but not to sane people, anyway?  It shouldn’t be.  And why is it okay to imply that I’m crazy – and therefore apparently not worth listening to – because I was horribly abused by a psychologist on a power trip?)

TL;DR:  I had a psychologist once who told me that he wanted to kill the person I was and replace me with someone who could function better in the world and generally be a happier and better person or something along those lines.  He told me this, explicitly, many times.  His abuse did more damage to my mind than the rest of the psychiatric system combined.  And the one time I confronted him about the matter, he told me that it was all okay because he was doing it to keep me out of a state institution.  Except he was actually doing it because he got off on power and control.  Everything else was just an excuse.  It was horrible in ways I can’t even describe. 

133 notes

11:29am August 2, 2015

➸ The Myth of "Official": autism and self-diagnosis skeptics

clatterbane:

withasmoothroundstone:

I’m officially diagnosed, I once posted eight to ten different versions of my official diagnosis (PDDNOS, CNS disorder NOS (with detailed descriptions of autistic sensory and motor traits afterwards), autistic disorder, autistic catatonia, etc.) from over the years from the ages of 14 to 22ish, and I still get called a faker with alarming regularity.  If official diagnosis meant anything to these people, they’d have respected mine more than they respect plenty of people who’ve done less to prove themselves than I have.  The fact that they didn’t respect my official diagnosis, says everything.  They only say this crap to manipulate people.

I also got accused of stupidly self-diagnosing for going in to see a doctor and saying “I think X may be going on”. Which was ultimately wrong, but he (and several after him) concurred that X probably was the problem.

That would usually be considered a totally fine and normal course of action if you were talking about something more value neutral, like high blood pressure or a broken arm.

But, when it’s something stigmatized which somebody else doesn’t want to hear? That can also be “self-diagnosis”, and it’s your own fault if you get abusive treatment and/or things just don’t work out well.

Funny how that works, with the moving goalposts.

I’ve noticed that too.

Also misdiagnosis gets seen differently depending on the diagnosis.

Like I’ve been called a liar for saying I was diagnosed with autism at the age of fourteen. 

Why?  Because my diagnosis was changed to schizophrenia (at least in the eyes of some of my doctors, not others) when I was fifteen, and when I was sixteen or seventeen I wrote something publicly about being diagnosed with schizophrenia and “wanting to work with autistic children” (read: I had an autistic friend and people told me this must mean I “should work with autistic children” and I was pretty echolalic still when I wrote that and yeah), and therefore I couldn’t possibly have been diagnosed with autism before that point, because if I had, I would have just said I was autistic.

And somehow, like, I wasn’t supposed to be confused.  I wasn’t supposed to believe what doctors told me when they said I had been psychotic since infancy and schizophrenic since adolescence.  Even though they not only told me that, but told me I would never get better until I began acting schizophrenic (if I didn’t say I heard voices I was told I was in denial, just as an example), and I was living 24/7 in an environment where these people had total control of my life.  I was supposed to somehow know that you can’t be psychotic from infancy.  I was supposed to somehow know that these people who had control over my life were reading everything they said about me and my family, almost verbatim, straight out of a book from the seventies by Frances Tustin about autism and childhood psychosis (most of the “childhood psychosis” she was talking about would now be considered autism, including regressive autism).  And that these doctors themselves were throwbacks with an antiquated view of both autism and psychosis, antiquated even for the time period this was taking place in.  I was supposed to know all this as I was going through it as a very confused autistic teenager with a lot of emotional problems due to long-term abuse of a number of kinds from a number of sources.

The fact that I believed my doctors at the time and said exactly about myself what my doctors told me to say about myself is now thrown back in my face as evidence that I’m a liar and that I must really never have been diagnosed with autism at all, or only diagnosed in adulthood.

Read that again.

I said everything my doctors told me to say.

I believed everything my doctors told me to believe.

I did everything my doctors told me to do.

To a fucking fault.

And the fact that I did that.

Gets thrown back in my face.

As evidence that I need to listen to doctors more and that I probably “self-diagnosed” (i.e. “didn’t listen to doctors”).

Also note the assumption that you can’t ever be misdiagnosed after a correct diagnosis.

[This gets seriously long after this point.  Be warned.]

Keep reading

106 notes

3:10am December 31, 2014

“Decrease, that’s Dr. R. alright…”

-a nurse at a mental institution I was in

Dr. R. knew what it was like to have to live most of your life on medication.  He didn’t feel quite like himself on his ADD meds. And he badly needed them in order to work at his job. Even with the meds his secretary had to work harder than most secretaries to accommodate him. Off his meds he literally could not complete a full sentence because his mind and interest raced from one topic to another so fast his mouth couldn’t keep up.  So he took “medication holidays” most weekend where he wouldn’t have to have many responsibilities that required concentration.  And his ADD was more severe than that of most people I met, so it wasn’t just a case of “I could function without my Ritalin, I just choose to take it or not on a whim.”  He could not function without it, he needed constant assistance from others without it.  And yet he still chose not to take it some days, because he found that he felt like too much of a different person on the meds, a person he couldn’t fully recognize or identify with.

As a result, he preferred to give his patients as little medication as he could get away with.  As in, the bare minimum to help the person function, and if it was not helping the function and he knew it, he would taper them off it altogether.

The nurses and psychiatric technicians who hung out behind the nurses station and gossiped constantly (but who suddenly were “busy charting” if a patient needed help)… I spent a lot of time in isolation rooms that had a door opening into the nurse’s stations.  And the nurses and psych techs loved to use neuroleptics (a.k.a. antipsychotics, major tranquilizers) and minor tranquilizers (a.k.a. sedatives, hypnotics, etc. stuff like Ativan/lorazepam) in order to incapacitate patients and make us easier to manage.  So one day, when I was tied down an isolation room just behind the nurse’s station, I heard them talking about Dr. R.’s decision to decrease one of my medications.  

Dr. R. had noticed, and written in his admission and discharge summaries, it went something like… “We’ve found that the amount of  medication required to control Amanda’s destructive behavior is uncomfortably close to, and sometimes exceeds, the amount of medication that renders her completely incapacitated.”  Well, yeah.  Neuroleptics work to control behavior.  And they are now and have been for at least ten years, been recommended for autistic people’s aggressive behavior towards ourselves or other people.  Eventually getting to the point where some doctors only know they’re prescribed “for autism” and prescribe them to all their autistic patients, which is horribly irresponsible.  Anyway, neuroleptics work to control autistic people’s behavior – and other people’s behavior.  They’re rampant in the developmental disability world for auties, people with intellectual disabilities, people with cerebral palsy, people with severe multiple handicaps, etc.  

And they work to control our behavior by disrupting the links between thinking and acting.  A person on neuroleptics may look tranquil, hence the word ‘tranquilizer’.  But on the inside, we may feel lost, confused, as if our mind has been scattered to the winds and we can’t find all the pieces and put them back together again, agitated, restless, furious, terrified, all these things at once.  But it won’t show on our face or body unless we get the side-effect of akathisia.  But so few people know about akathisia (severe restlessness that can escalate to violence) that they’ll take the akathisia as a reason to give more of the drugs that are causing it in the first place.  

Akathisia can become permanent, too – it’s a myth that tardive dyskinesia is the only permanent side-effect of neuroleptics.  (“Tardive” basically means symptoms that appear slowly rather than all at once.  The tardive movement and cognitive syndromes that can occur in neuroleptics are often permanent, even if you remove the drug.  There’s also acute versions of the same conditions, that do go away when you remove the drug.  Acute akathisia vs. tardive akathisia, for instance.)  The tardive syndromes I’m most aware of include:

• Tardive dyskinesia, which can range from a slight involuntary movement at the edges of the tongue, to full-body contortions that are so severe they can inhibit breathing and kill people.
• Tardive akathisia. That same psychological and motor restlessness, only it doesn’t go away once you stop the drug.
• Tardive dystonia.  Any form of dystonia (a movement disorder, I’m too tired to Google it and give you information) that remains permanently after the drug has been discontinued.
• Tardrive dementia.  Cognitive impairment that does not go away after the drug has been discontinued.

When I say “does not go away”, I don’t just mean the first year of being off of these drugs.  I mean that it doesn’t go away pretty much ever.  It may improve to an extent going off the drugs, but then plateau and stay at the same level.  It may actually get worse going off the drugs, because some of the drugs have effects that mask the full extent of the tardive dyskinesia or other tardive syndrome.

And did I mention that neuroleptics are generally a bad idea for autistic people with catatonia?  Yeah.  Not that they knew that when they were busy loading me full of thee drugs.  Because there were only two papers out on autistic catatonia at the time, and it didn’t even have the name autistic catatonia yet.  The first article that wasn’t a case study, came out about a year after I stopped neuroleptics.  But it explained why (I didn’t notice this, but my whole family did, so it must be real) the moment I went on neuroleptics – not even long-term, just my first dose of Thorazine  and Haldol for behavior control in a (different from the above) mental institution.  The moment I took them apparently my motor skills took a nosedive they’ve never recovered from.  It was like they accelerated the progression of the autistic catatonia.

I know someone else with autistic catatonia.  They were on Mellaril throughout a lot of their childhood.  It was only after someone decided to take them off of it, that they learned to use speech for communication.  They were twelve years old at the time.  In my case, I began showing obvious symptoms of autistic catatonia (not “catatonic traits that exist in all autistic people”, but actual deterioration of my motor and speech abilities) at the age of 11 or 12.  I was first given neuroleptics at the age of fourteen.  Which made me lose skills much faster.  When I went off of them at age nineteen, I had a period where everything got much, much worse, and then a gradual period of things getting better, and then I went back to my previous pattern of one step forward and three steps back, when it came to losing motor planning skills.

Anyway, I just remembered the scorn heaped on Dr. R. by the nurses, because he made it very difficult for them to use chemical restraints for their own convenience.  Shortly after this happened, they resorted to deliberately escalating situations – such as grabbing me and hauling me to the isolation room for no reason at all, with no warning at all – and if I struggled, at all, then I was a danger to others and it was okay for them to tie me down and drug me.  Dr. R. was not happy about this, so he assigned me and another patient who was getting treated similarly, a one-to-one aide from Visiting Nurses, who could take notice of anything the institution staff were doing to control me.  One day one of those aides saved my life, but that’s a long and traumatic story I have no interest in rehashing at the moment.

Suffice to say, for Dr. R.'s patients, “Decrease , that’s Dr. R…” was a good thing.  He didn’t always succeed, and he had all the dangerous biases that decades working as a psychiatrist would give a person.  But he tried.  He tried to give the smallest amount of a medication he could, that would still work, and he’d work with you on “drug holidays” if that’s what you and he felt you needed.  So despite his shortcomings – ones he shared with most in his profession, unfortunately – he was still the best psychiatrist I ever ran into.  It wasn’t just the ADD either – he grew up with a speech impediment and social problems, and he had attempted suicide at least once as a teen.  When he heard about the autistic community’s use of the word “cousins” (people who are not autistic but share many autistic traits, especially perceptual or social traits), he said he was a cousin.

And he’s the one who helped me get off my psych drugs in the end – all of them.  It was harrowing, even tapering slowly.  But we both acknowledged it had become a “the old lady who swallowed the fly” situation – most of the drugs were to treat side-effects of other drugs.  In psychiatry there’s an unfortunate tendency to look at side-effects as “this always existed and the drug just unmasked it”.  Like… my neurologist gave me a migraine drug once, Topamax, that changed my personality in a very severe way.  And when my friends told him what was going on, he just said “Discontinue it, immediately.”  Within psychiatry, those personality changes would’ve been said to be an underlying psychiatric condition that the Topamax unmasked, and I’d be given drugs to “treat” that condition, which would then “unmask” more conditions I didn’t really have, and so on.  So he helped me get off of everything.  He believed in me even when people were saying the withdrawal symptoms were proof I belonged on the drugs after all.  He stuck with me the entire year it took for me to get back to what was now normal to me.  He continued to make some major mistakes, but now that I was a legal adult and off of my meds enough to think clearly, I was able to get away from those mistakes in a way I hadn’t been able to as a child.

I never became the next Temple Grandin, which is what he wanted me to be.  But I think if he’s still around (he was old and had a heart condition, so he may well be dead), he’d be proud of what I’ve accomplished in self-advocacy and research alike.  And he’d be glad that my physical problems were finally being diagnosed for what they were – he’d early on had to help me fend off doctors who believed my physical problems were psychiatric in nature just because I had a developmental disability and a long psych history filled with diagnoses and misdiagnoses.  I hope he got a chance to watch at least some of that unfold.  I lost touch with him after he retired.

Anyway… I’m still proud of him for decreasing my meds and helping me get off of them, and believing in my ability to get off of them, even in the face of overwhelming pressure to do the opposite and have me so sedated (actually, at that point, twice the toxic dose of a neuroleptic, plus another neuroleptic on top of it) that I was falling asleep everywhere and having atonic or myoclonic seizures every few minutes when I was awake.

I’ve always been ambivalent about him – he seemed like a character in a book who is good but has a tragic flaw – but in this area, I am absolutely happy with the majority of decisions he made.  The majority, mind you.  But that’s more than I can say for any other psychiatrist I’ve ever had.  I really lucked out, because he was rarely on duty, and the night I came in I was assigned to him because he was on duty that night.  He instantly figured out that I was autistic (even though I was there for suicidal behavior), he saw me as something akin to an “idiot savant” (his words, not mine), and he developed a strong bond with both me and my family that carried us through some of the worst bullshit we encountered in the system.  Which was good because, as my mother pointed out, my parents were never educated in how to deal with an autistic teen with a seemingly sudden explosion  of neurologic and psychiatric problems.  And he decreased my meds when possible.

62 notes

2:36pm October 3, 2014

madeofpatterns:

matesprit:

apersnicketylemon:

People with ADHD do not become zombies, sheep or any combination of the two on medication. We really don’t. STOP fearmongering the medication that helps us function and stop refusing to treat children just because some fool on the internet with no medical background said it would turn your kid into a zombie.

but at the same time please do not shame people like me that feel like ADHD medication takes away from our personalities and makes us feel bad because not everyone reacts to medication the same way and for a lot of people it may not help and at the end of the day it should be the choice of the person with ADHD whether or not to pursue medication. the decision shouldn’t be made by an asshole on the internet or parents or people who are “just trying to help” and should be made by the person who lives ADHD because ultimately they’re the only ones who’ll know whether or not it’s helping them. please respect children with disabilities and allow them to make their own decisions.

both of these.

*insert name of every other psychiatric medication here*

And don't ever tell me what words I can use to describe what neuroleptics did to my mind, both temporarily and permanently.  I once got into a lonnnng argument with a guy who got mad at me for describing them as “brain-damaging drugs” even though I have the tardive dyskinesia to prove it.  He thought I was insulting everyone who chose to use them and that brain damage was an insult and that nobody should ever use the term brain damage.  Hello I’m brain damaged and I have no trouble saying the words brain damage.  If you don’t want to be called that, fine, especially if (as this guy didn’t) you don’t actually have brain damage at all in the first place.  But lots of us who do have it (from meds or from other things) have no trouble calling it what it is without any frigging euphemisms.

1,110 notes

12:19pm September 30, 2014

fullyarticulatedgoldskeleton:

youneedacat:

madeofpatterns:

not anti-psychiatry, but anti  some aspects of it

I don’t like how it conflates all these things:

• people who have neurological problems that affect cognition or movement
• effects of past trauma, current abuse, or unsuitable environments
• people who create problems for other people

I’m anti-psychiatry, but I don’t think people know what I mean by that.  This is extremely long so it’s under a cut with a TL;DR at the end.  But please don’t respond to me if the only line you’ve read is the above one, because you will not grasp what I mean.

Read More

This is my stance on psychiatry, too, based on my own knowledge. Mel’s is a lot more thoroughly researched and extensive.

I forgot to put into that post, that I think services need to be made available to psychiatric patients on the same basis that they are made available to people with physical or developmental disabilities.  That is:

• Figure out what the person has trouble doing.
• Figure out if there’s a way to teach them how to do it.
• If they still can’t do it consistently, or if they don’t want to be taught how to do it, then do it for them, or assist them in doing it themselves, depending on their wishes.
• All of this should be directed by the disabled person, not by some random caseworker who decides what’s best for us.
• This should be available in the person’s own home and they should never have to move in order to receive this assistance.

That’s how it’s done in the DD and physical disability world, at its best.  That it’s not done that way in the psych world speaks volumes about why I don’t like psychiatry.

113 notes

2:57am September 30, 2014

madeofpatterns:

not anti-psychiatry, but anti  some aspects of it

I don’t like how it conflates all these things:

• people who have neurological problems that affect cognition or movement
• effects of past trauma, current abuse, or unsuitable environments
• people who create problems for other people

I’m anti-psychiatry, but I don’t think people know what I mean by that.  This is extremely long so it’s under a cut with a TL;DR at the end.  But please don’t respond to me if the only line you’ve read is the above one, because you will not grasp what I mean.

Keep reading

113 notes

4:26pm September 28, 2014

➸ Reblog if you think that Fibromyalgia is real

chaoticidealism:

clatterbane:

squidsqueen:

wastelandmae:

thisisableism:

loki-zen:

spoonie-mj:

the-jacobguy:

spoonie-mj:

A lot of people have told me that Fibromyalgia isn’t real. I’ve been told that I imagine the pain and exhaustion and that I do it for attention….

I definitely agree that it’s real. You don’t get the same pattern of symptoms over and over in different people if it’s not a real phenomenon that causes that pattern of physical symptoms in multiple people.

However, as a psychology student I really want to respond to the statement, “They don’t believe it’s real; they just give me antidepressants or tell me to exercise.” The not-believing-it’s-real part is a problem, but real conditions causing pain and fatigue actually are treated with both of those things. Antidepressants have been used to help people in stressful situations—for example, tested in women with breast cancer, people who are obviously in a tough situation—and were found to be beneficial. Someone dealing with fibromyalgia might feel better when taking antidepressants for the same reason that the breast cancer patients did, because it helped them cope with a difficult experience that involved pain and physical illness. I’m not sure about exercise, about whether it’s beneficial for fibromyalgia directly, but I do know that exercise, if not overdone and engaged in only when you actually have the energy for it, is of general benefit. People with physical disabilities often have trouble accessing exercise, and even adapted recreation tends to focus on more “obvious” physical disabilities rather than on people with fatigue, endurance, and pain issues.

The point, I suppose, is that just because something is a real, physical condition, doesn’t mean it doesn’t have mental/emotional side effects, and that just because something is a treatment for a mental/emotional condition, doesn’t mean it’s not beneficial for physical ones.

Yeah and amitriptyline, an antidepressant, is known to actually treat some kinds of pain in some people.  Not because the pain is psychosomatic, but because that particular drug somehow treats pain.  Just like Lyrica treats neuropathic pain even though neuropathic pain isn’t caused by seizures.

I think the problem comes in when things like antidepressants and exercise are treated as the first line of treatment specifically because the doctor believes the problem to be wholly, or mostly, psychiatric in nature or caused by lack of exercise.  There’s a huge, ongoing problem for people with chronic fatigue syndrome where they are prescribed a ‘graded exercise’ program that makes a lot of people far worse (because CFS involves exercise intolerance), and basically amounts to punishing people for having stamina problems.

If fibromyalgia and CFS were truly seen as physical diseases on the same level that other physical diseases are, then the treatments given would be first aimed to treat the physical symptoms, and only then aimed to treat the psychological symptoms and lifestyle problems that may be causing problems.  (And only then if the psychological and lifestyle problems exist in the first place, and aren’t just being assumed to exist because FMS and CFS are considered quasi-psychiatric by a lot of doctors.)

Like… I have a lot of physical diseases, and nobody has tried to give me antidepressants for them, except in cases where they thought amitriptyline might help with something specific and physical like pain or sleep.  I do have medication for anxiety, which I am very glad for right now as I’m dealing with my parents’ severe illnesses and my father’s impending death.  And I also need anxiety meds any time I’m in the hospital or I have nonstop panic attacks starting sometime around my second day there.  But if someone tried to tell me that my very much physical condition was caused by anxiety and this is why they were prescribing them, I’d get insulted pretty fast.  (Oh yeah and my anxiety meds also happen to treat seizures and nausea.  Not because they treat anxiety, but because they just also happen to treat those things.  Nausea is one of my main reasons for using lorazepam.)

And it’s not that psychiatric conditions are less real.  It’s that treating physical conditions as psychiatric is outright dangerous, it results in people dying.  Of course I’m sure you know everything I’m saying here, I’m just adding it on for the benefit of anyone who doesn’t.

934 notes

5:36pm September 8, 2014

LGBTQ/crazy problems #29183

While coming out, go to an LGBTQ community center.

Mention time spent in mental institutions.

Hear utter horror in a woman’s voice as she asks, “For being a lesbian?”  The entire room tenses up and freaks out.

Say “No,” and explain the actual circumstances of your commitment to mental institutions.

The entire room lets out a collective sigh of relief and someone actually says “Oh, that’s okay then.”

Leave, while restraining urge to kick everyone’s teeth out.

31 notes

11:30am August 29, 2014

pervocracy:

madeofpatterns:

matesprit:

apersnicketylemon:

People with ADHD do not become zombies, sheep or any combination of the two on medication. We really don’t. STOP fearmongering the medication that helps us function and stop refusing to treat children just because some fool on the internet with no medical background said it would turn your kid into a zombie.

but at the same time please do not shame people like me that feel like ADHD medication takes away from our personalities and makes us feel bad because not everyone reacts to medication the same way and for a lot of people it may not help and at the end of the day it should be the choice of the person with ADHD whether or not to pursue medication. the decision shouldn’t be made by an asshole on the internet or parents or people who are “just trying to help” and should be made by the person who lives ADHD because ultimately they’re the only ones who’ll know whether or not it’s helping them. please respect children with disabilities and allow them to make their own decisions.

both of these.

*insert name of every other psychiatric medication here*

There’s also another dimension to this, which is that sometimes people really are making tradeoffs.  Like, the meds I take for my depression have significant side effects.  In addition to physical things, my emotions are altered by the medication and not always for the best.

But my options are “emotions altered by medication” or “emotions altered by depression.”  Being totally unaltered isn’t on the table.  So yes, my medication is taking away from my personality, and I’ve decided that’s still better than being depressed.  I don’t have to believe that depression meds are harmless to decide I’d rather be on them.

(And this goes in reverse, that someone can decide to take the tradeoff of not taking medication even though their condition really does hurt them.)

I guess what I’m saying is pretty obvious, but I sometimes feel like it’s underrepresented in both sides of this discussion.  Medical interventions usually involve making a tradeoff of some kind, not just deciding whether the intervention is good or bad.

My psychiatrist had very severe ADD.  So severe that there was no way he could finish a sentence, let alone hold down a job, when he was off his meds.  But he felt like the meds did fuck with his personality in ways he didn’t like.  So what he’d do is he’d take them during the week, and then go off them during the weekends.  And because he had that experience he was a lot better than most shrinks at empathizing with patients who had to be on meds they didn’t like.

1,110 notes

10:44am August 18, 2014

Things You Can do to Help Disabled People That Don’t Cost A Cent

neurodiversitysci:

• Do not talk about an obviously disabled person in front of them as if they can’t hear or understand you.
• Do not talk to a disabled person’s companion instead of them.  
• Ask permission before touching people, or their wheelchairs/other equipment. Even if you want to help.
• Ask disabled people about their lives and really listen to their answers.  (Within reason. Asking people personal questions about their sex lives, for example, is rude unless you are very close to them and they’ve communicated they’re OK with that).
• Listen to what they say whether they are speaking, writing, typing, using text to speech, using a letterboard, using PECS, gesturing, using sign language, or using any other form of communication.  People who cannot speak can still communicate.
• Stand up for people you see getting bullied.
• Understand that disabled people don’t just need friends, they can be friends, too.
• Every public place does not need to have loud, blaring music and TVs with flashing screens.  
• If you blog, put bright, flashing images that can trigger seizures under a cut so that people with seizures can avoid looking at them.
• If a job can possibly be done without a person driving, don’t require candidates to drive/have a driver’s license, and don’t interview candidates and then reject them because they don’t drive.
• When talking to someone who has trouble speaking or stutters, and takes a long time to speak, wait for them to answer. Don’t keep repeating the question or pressuring them. Yes, if you’re like me and your mind is going really fast and you forget what people are saying if they take too long, it can be hard to be patient.  Do it anyway.
• If you are talking to a deaf person, make it easier for them to lip-read by facing towards them while looking at them, and not covering your mouth with your hands.
• If you are talking to someone with hearing impairment or auditory processing disorder, it is more helpful to slow down or rephrase what you’re saying than to just speak more loudly.  
• Some disabled people have difficulty understanding nonliteral language such as metaphors and idioms (e.g., “a stitch in time saves nine”). If you’re talking to someone like this, try explaining what you mean by these figures of speech, or just not using them.
• Recognize that failure to make eye contact does not mean someone is lying to you. It may be uncomfortable for them.
• Recognize that unwillingness to go out to loud, crowded bars does not mean someone isn’t interested in socializing with you.
• If people have difficulty spelling, or using the appropriate jargon/terminology for your social group, do not assume they’re stupid.  You may need to paraphrase some “jargon” for them.
• Recognize that a person can need time alone and it doesn’t mean they don’t like you or want to be with you. It’s just something they need so they can function at their best.
• If a person does not recognize you, do not assume they don’t care about you.  They may be face-blind.
• If a person does not remember your birthday (or other major names, numbers, or dates) do not assume they don’t care about you. They may simply have a bad memory.
• Understand that a disabled person’s talents, however esoteric, are real, not unimportant “splinter skills.”
• Colorblindness affects more than just knowing what color something is.  To a colorblind person, colors that they can’t see will look the same if they have the same degree of lightness/darkness.  That means that to a red-green colorblind person, a red rose on a green background will blend in instead of contrast starkly, and the Chicago CTA El map will be difficult to understand.  Understand that something that stands out to you and seems obvious may literally not be visible to a colorblind person.
• Accept stimming.
• Don’t tell them “but you look so normal.” But, if they accomplish something you know they were working really hard to do, it’s great to compliment them on it.
• Understand that a person can be working incredibly hard to do something and may still not perform as well as you’d like them to, as well as the average person would, or as well as the situation demands.
• If someone has a major medical problem, disability, or chronic illness, then just eating some special healthy diet or exercising more isn’t going to cure it. It might help, it might hurt, it might do nothing, but they’ve probably heard it before, and it’s none of your business in any case.
• A person with OCD knows that checking or counting or whatever compulsion they perform won’t really prevent disaster from happening, it’s just a compulsion. That doesn’t stop them from feeling the need to do it anyway.  A person with anxiety may know at least some of their fears are irrational or unlikely to occur. That doesn’t stop them from feeling anxious.  A person with trichotillomania may know it hurts them to pull out their hair or pick at their skin, but they have trouble stopping themselves anyway.  A depressed person may know they would feel better if they got out of their house and talked to people, but that doesn’t make them feel any more up to doing those things. A person who hallucinates may know the hallucinations aren’t real, but that doesn’t make them go away or feel less upsetting.  You see the pattern?  You can’t cure people with mental illnesses by telling them they’re being irrational or hurting themselves.  If it were that easy, they’d have cured themselves already.
• Do not tell a person with ADHD or mental illness that they should not be taking medication.  This is a personal decision. Furthermore, since medications have wide-ranging effects on people’s bodies and minds and often unpleasant side effects, most people taking medications have thought through the issue, done a cost-benefit analysis, and decided that the ability to function better is worth it.  Their decision should be respected.
• A disabled person with intellectual disability who has the academic or IQ abilities of, say, a seven year old does not actually have the mind of a seven year old. They have different life experiences, needs, stages of life, bodies, and so on.
• If a disabled person is having a meltdown, they are not angry, they are terrified.  They’re not throwing a tantrum or being aggressive, they have gone into fight or flight. The best thing you can do is remain calm yourself and help them calm down. It may help to keep your distance, keep your voice low and calm, let them retreat to a safe place if they know to do that, or remind them to do so if they don’t.  Reasoning with them won’t work well because they’re unlikely to be able to hear and understand you.  The worst thing you can do is start yelling yourself, threatening them, be violent to them, cut off their escape route, or get right up in their personal space.  

Other ideas?  Please reblog and add more.  The more the merrier.

I’d add to this one:

• Do not tell a person with ADHD or mental illness that they should not be taking medication.  This is a personal decision. Furthermore, since medications have wide-ranging effects on people’s bodies and minds and often unpleasant side effects, most people taking medications have thought through the issue, done a cost-benefit analysis, and decided that the ability to function better is worth it.  Their decision should be respected.

That’s what you have, but I’d make it more generic.  I wouldn’t say “Don’t tell someone that they should not be taking medication.”  I would say “Don’t tell someone whether or not they should be taking medication.”  Because most people not taking medications have also thought through the issue, done a cost-benefit analysis, and decided that the bad effects of taking the medication outweigh the good ones.  Or we have already tried taking medications, possibly tried taking more than 10 or 20 different varieties of medications at all different doses, and found that not only did they harm us, they didn't help us, or didn’t help us enough to be worth the harm.

TW for psychiatric abuse:

I don’t like lists of this nature where the decision to take medication is always the one represented as the better one.  Because I’ve been a psych patient who does take meds, and one who doesn’t take meds.  And while you get shit from people either way, the shit I have gotten for not taking meds has always been far more dangerous than the shit I’ve gotten for taking meds.  And nobody ever acknowledges that.  They talk about the “stigma” of taking medications, but they don’t talk about refusing meds, being tied down, and having meds shot in your ass that then had life-threatening side-effects, that you literally weren’t allowed any reprieve from until you agreed to take a less dangerous (but still invasive and mostly useless to you) med.  Or the time a doctor told my parents to threaten to throw me out on the street if I didn’t take my meds.  Or the near a year I spent on more and more meds that actually were at twice the toxic level, giving me entirely new and nasty kinds of seizures, while nobody checked the med levels and everyone blamed me and gave me more and more meds the more symptoms the meds gave me because supposedly all those symptoms were ‘anxiety’ and would go away if I took more meds.  Or the many other violent and dangerous ways I was coerced into taking medications that did really bad things to my body and gave no actual benefit.

I actually do take psychiatric meds at this point, although nothing heavy-duty.  And I do understand that there are people out there who are really nasty to people who are on meds, and try to persuade you not to take them.  I still remember when I was on neuroleptics and had a friend who would dramatically look away from me every time I opened my med box, to show his disdain for the whole thing.  And things like that.  But none of the 'stigma’ I’ve ever experienced for being a med-compliant psych patient has ever come even close to the level of utter horrors that I’ve experienced for being “noncompliant” with meds.  At which point it seemed like anything goes as long as it would force me to get meds into my system. 

And I don’t see a lot of people acknowledging that side of the coin.  I see a lot of people willing to acknowledge there’s a stigma to taking meds, but I don’t see a lot of people willing to acknowledge the price paid by people who don’t want to take meds.  Worse, a lot of the people who are so keen on ending the stigma of taking meds, are also quite keen on making it sound like people who are unwilling to take meds are doing something wrong, and that the things that are done to us to force or coerce us into taking them are for our own good.  Or that if we don’t want meds, we must not want to get better.  Or that it means we aren’t taking care of ourselves.  I’ve heard it all.

I have always been pro-choice when it comes to meds of any kind, even illegal drugs.  (Not that I think illegal drugs are usually good for people, but that I don’t think it does anyone any good to criminalize them or make people feel like shit for taking them.  And sometimes they are actually good for people, see medical marijuana for instance.  But that’s a whole different topic.)  So I think people can put into their body whatever they want to, and shouldn’t get crapped on for doing that.  But I also think people should have a choice not to take medication.  (And that if they want to be forced to take medication in any circumstance, they should draw up a psychiatric living will that states the circumstances where this is and isn’t okay with them.  These things exist.)  

And that’s where many of the people who are so big on ending the stigma of medication end up disagreeing with me.  Because many of them tell me straight out that people who won’t take medication are delusional, or are not to be trusted, or are not interested in taking care of themselves, or all these other things.  Some of them have no problem with forced drugging and have told me so.  (A lot of this ended my ability to attend events at local mental health clubhouse type places run by “consumers”, because it turned out that they were willing to have people involuntarily committed from their premises, and that they believed in forced drugging under those circumstances, and all sorts of other horrible stuff.  So this wasn’t just a thing on the Internet, this was “oh shit there goes the one place I could meet people who understood what I was going through”.  They treated us “non-compliant patients” as if we were “low functioning”.)

Anyway… I have to go burp my g-tube so I need to end this now, this may be over-explaining my case but I wanted to explain why I think that statements like that one should be neutral, as in it should go both ways, people have a right to make a decision about meds, whatever that decision is, and have it respected.

3,653 notes

6:21am August 18, 2014

madeofpatterns:

like, some people think the world is like this:

• depressed people don’t want to admit they’re depressed because stigma
• they need to be convinced that, for them, taking medication is just like a diabetic taking insulin
• if they disagree, it’s because either stigma or their disease is leading them astray

and some people think the world is like this:

• depression isn’t real
• it’s made up by therapists to get power over people
• or by drug companies to get money
• or by people who want to make excuses for not improving their lives
• if people understand this, they can think their way out of ~depression~ and be ok

and like… both of those views do a tremendous amount of damage. 

To bring the hashtags someone wrote into focus:

#ableism

#this is somewhat of a tangent but it reminds me of one time I was at a psych ward

#how during a group session the people in the ward were talking abot how they’re learning to ask for help now

#And I said “I have been asking for help my whole life.  There isn’t any.”

#but they just sort of ignored me

And that… unfortunately sounds like par for the course with my experiences of psychiatric help.  I did everything they told me, I twisted my brain into a pretzel for them, and all I got from it was a pretzel-shaped brain, I didn’t get any help.

Also, it is possible to think your way out of depression.  It’s not easy, it’s not fast, and it’s not possible for everyone.  But it is, in fact, possible.  I know that you’re talking about something other than what I’m talking about.  But I feel like I always have to mention this.  Because you mean “It’s not possible to just snap your fingers and not be depressed,” which is true, but people can take it as meaning “There are no ways to change your thinking that will cause depression to go away,” and that is not true.  Even psychiatry admits that much from time to time.

38 notes

6:15am August 18, 2014

“Until I started taking my antidepressants, though, I didn’t actually know that I was depressed. I thought the dark staticky corners were part of who I was. It was the same way I felt before I put on my first pair of glasses at age 14 and suddenly realized that trees weren’t green blobs but intricate filigrees of thousands of individual leaves; I hadn’t known, before, that I couldn’t see the leaves, because I didn’t realize that seeing leaves was a possibility at all. And it wasn’t until I started using tools to counterbalance my depression that I even realized there was depression there to need counterbalancing. I had no idea that not everyone felt the gravitational pull of nothingness, the ongoing, slow-as-molasses feeling of melting down into a lump of clay. I had no way of knowing that what I thought were just my ingrained bad habits — not being able to deposit checks on time, not replying to totally pleasant emails for long enough that friendships were ruined, having silent meltdowns over getting dressed in the morning, even not going to the bathroom despite really, really, really having to pee — weren’t actually my habits at all. They were the habits of depression, which whoa, holy shit, it turns out I had a raging case of.”

Not Everyone Feels This Way — The Archipelago — Medium (via brutereason)

I wish that more people would acknowledge that… this is a real thing.

But so is everyone telling you that you have a chemical imbalance when really you’re miserable because you’re being mistreated.

So is having depression that gets *worse* with therapy and medication.

And so is being read as depressed when you have really bad executive dysfunction for another reason.

And I feel like… most people either pretend that neurological depression doesn’t exist, or pretend that the other things don’t exist and that anyone who doesn’t think they’re depressed must just lack the insight that comes from being properly medicated.

And it’s really frustrating. I wish I knew how to make it better. Both misconceptions hurt a lot of people.

(via madeofpatterns)

Agreed.

Also I think pure neurological depression is much rarer than people make it out to be, and yet it’s the version that gets the most attention as to what “real” depression is supposed to be like.  Depression rates are known to vary based on a lot of situation and cultural factors, for instance, and yet we’re supposed to believe that all depression is a simple ‘chemical imbalance’ and that taking meds is 'just like diabetes and insulin’.  Mind you, meds can work even on situational depression sometimes, but they don’t always, not by a longshot, and in many cases they do no better than placebo overall.  

But again, nobody’s supposed to talk about that.  All mental illness is supposed to be purely neurological or biochemical in origin.  And for some reason the SJ community has picked up this particular bias and run with it.  I remember it starting to solidify back with certain disability rights bloggers, and wondering how it was a disability rights stance to completely deny the experiences and questions of a large portion of the ex-patient community, in favor of basically the line favored by the psychiatric establishment.  And to say it’s ableist to do otherwise, at that.  That really confused me when I first started seeing it happening, and it confuses me to this day.

32,222 notes

6:45am August 17, 2014

I say that specifically because I don’t think people will infer ‘disabled’ from the mentally ill part. People expect me to just take pills, see a therapist, and then be able to go out in the world and get a job and do able people things.

Yeah, that.

It makes me enraged that mental illness is not treated as a disability, through the service system.

Lots of mental illnesses involve the same functional limitations that developmental disabilities impose on people.  As in, the exact same ones. In fact, some conditions exist in a strange area of overlap between mental illness and developmental disability.  These include things like:

• ADHD
• Autism
• Tourette’s
• (sometimes even) intellectual disability (given that it’s in the DSM)
• Childhood bipolar
• Childhood psychosis including schizophrenia and schizoaffective
• Schizophrenia in general (which is, in some forms, now being thought of as a neurodevelopmental disorder with clear signs from early childhood long before it becomes “clinical”)
• Fetal alcohol spectrum disorders
• Schizotypal autism
• Multi-complex developmental disorder (MCDD)
• Epilepsy, especially temporal lobe epilepsy, but in the past all epilepsy

All of those things occupy a grey area between developmental disability and psychiatric disability, which illustrates that both categories are accidents of history, not genuinely scientific splits within some objective medical system.

Anyway.

If I had my way.

I would make it like this:

People go to a psychiatric program for people who want to live on their own.  They get assessed accurately for what their skills are.  This would be done the same as it is for developmental disabilities and physical disabilities, with some modifications depending on the nature of the disability.  The assessment of what a person needs, would matter more than their actual diagnosis, and they might not need an actual diagnosis to get services.

The assessment would basically involve two parts:

One would be formal and standardized to some degree.  There would be a pre-made list of areas a person might need help with.  The person and possibly their caregivers or family would be interviewed or asked to fill out forms, or both, detailing how much help the person needs on their worst days.  They would be specifically invited to talk about their worst days, being told, “If we don’t know how things are at their worst, then we’ll plan for the best days, and we won’t be giving you enough services to cover the worst days.  So we know you may be able to do better than this sometimes, but what we need is to know enough to be prepared for the worst.”  Possibly with a built-in apology for making people have to describe themselves at their worst, since that can feel quite degrading, but it can also be necessary to determine the help the person needs.

The second part would be much less formal.  The person (and caregivers and family) would be invited to have written things out beforehand, to describe the areas they have trouble in general.  The things that are important to them, whether or not they are also on the more formal assessment.  They would then be able to talk about all of these things, especially in case the assessment missed any major areas of difficulty they have functioning in the world.  Which any assessment is going to miss.  So this would take place after they already knew what was in the assessment, and had been through that, and maybe had already seen the results written out.

They would also be asked to correct anything written on the assessment that seemed to overestimate or underestimate their abilities (still understanding we’re talking about their worst days).

Then, they would work together towards a plan of how to help with these things.

This could include meds and therapy but wouldn’t have to, at all, and they would not get pressure in that direction regardless of how severely disabled they were.

But the biggest thing, like the biggest part of services for physically and developmentally disabled people?

Having staff person assigned to them for a certain amount of time a week, ranging from 24/7 roommate arrangements to someone coming in once a week for an hour to make sure they’ve got everything in their household running smoothly.  This person could:

• Entirely do the task for them, without any input from them.
• Do the task, but do the task under their direction.
• Do the task under their partial direction.
• Help them learn how to do the task themselves.
• Help prompt them to do the task fully or partially themselves (prompting can be gestural, verbal, physical, handing someone something, and a whole lot of other things).

In whatever combination of those things, that the person preferred, for as long as they preferred it.

That’s the ideal of what physically and developmentally disabled people get today.  The only reason psychiatrically disabled people don’t ever get this help, even though they need it just as much, is basically that they’re looked down upon it’s seen as their fault, psychiatry tries to make it sound like if they took their meds and went to therapy then their functioning problems would disappear, and because psychiatry gives a lot of condescending and false explanations for people’s problems functioning (always stemming from one emotional conflict or another, somehow).  Psychiatry even sees it often as “enabling” someone (I hate that word, in most contexts, but especially that one) if you help a psychiatrically disabled person do what they can’t do.

So if a depressed person can’t get out of bed, then they are going to need someone to clean their house until and unless they become able to do it themselves.  It doesn’t matter if they ever become able to do so, or if they never become able to do so, they need that help so they should have it.

People need help with bathing.  People need help with cleaning the house.  People need help with money management (and if prone to mania, may want to make arrangements in advance for how to handle that situation without becoming patronizing).  People need help with doing household chores like laundry and the dishes and taking the trash out.  People need help taking care of their pets.  People need help paying their bills.  People need help going to work and getting through their workday (in the DD world we have job coaches specifically for this if people need the help).   People need help cooking.  People need help eating.  People need help with all kinds of things.

And psychiatric services in the community don’t cover any of those things.  If you can’t do them, they think you’re not motivated enough so they try to “motivate” people by starving them and letting them live in their own filth, hoping that one day they’ll just magically grow abilities they never had before.  In reality that almost always makes things worse.  People have more and more trouble functioning the more chaotic and messy their environment is.  Forcing people to live that way is both patronizing and degrading.

There are generally no medications that will help a person gain these skills, nor is there any form of therapy that will help either.  That’s for the same reason those things don’t make physically disabled people or developmentally disabled people function better.  Psychiatrically disabled people aren’t some weird magical group of people where you pop in a pill  or send them off to talk therapy and magically they function better.

And it makes me so very enraged that services don’t work this way.

The agency I get services from has three wings:

Developmental services.

Children and family services.

Mental health and substance abuse services.

It’s the same fucking agency and they still won’t give purely mentally ill people the same supports they give you if you have autism or an intellectual disability.  Even if you need the same supports, even if you need them for nearly the same reasons.

If I could do one thing for this so-called ‘mental health reform’ everyone is always talking about it would be to give all psychiatrically disabled people the option to receive services in their own homes, whatever they want that home to look like, designed in the same way that the best services are designed for physically or developmentally disabled people in our own homes.  None of this “hospital without walls” NAMI bullshit that’s all about making sure people take their meds, with force if need be.  Just the ability to live with the same dignity everyone else does, with supports that are controlled by the person who gets the services (to the extent they can, and with help controlling those supports if they have trouble).

This shouldn’t be so much to ask.

The fact that I have never, ever heard of it happening anywhere, scares me.

Because this is how disability services are supposed to work.  FFS.  Seriously, FFS.  Because right now all I see in mental health services anywhere is abuse masquerading as support.  I’ve never seen the kind of support people actually need.

41 notes