As we said, "The People…United…Will Never Be Defeated!" To those like me who consider traditional, medically-approved eating disorders treatment violating, oppressive, and abusive

Okay, I just had to include this.  What I’ve been looking for is to see just how much NIMH is spending on eating disorders as compared to how much it is spending on schizophrenia, bipolar, OCD etc.

Of all the mental illnesses, the illness which gets researched the most is schizophrenia.  I was just on a page at schizophrenia dot com, a fairly outdated page I think, that predicts a CURE for schizophrenia by 2013.  A ton of work is being done looking into genetics and new therapies and I’m very happy about this.

This is what I read: As of 2002, 25% of schizophrenia patients recover completely.  25% are significantly improved but not deemed “cured,” and are probably able to function quite well.  Another 25% you might say are doing so-so and may or may not be living decent lives, and of that 25% that remain, 15% are in hospitals and 10% are dead (mostly suicide).  These statistics come from the book Surviving Schizophrenia, according to schizophrenia dot com, where I saw this data.  My fourth edition copy (2001) states that these statistics summarize the outcome after ten years.  After 20 years, 15% are dead and 35% are much improved (“managed”).  The book, Surviving Schizophrenia, is written by E. Fuller Torrey.  He says that because schizophrenia patients have abnormalities in their brains, they cannot be cured by this thing we call “therapy” but have to take medications for the rest of their lives.  He states that people who have schizophrenia often die young.  The causes of this young death are accidents, diseases, unhealthy lifestyles, inadequate medical care, and homelessness.

Given that Torrey is known to be big on medication, I doubt he’s going to make any statement about the fact that the medications given for schizophrenia (antipsychotics) cause risk of early death.  We know about the diabetes risk from Zyprexa is very high, and there is also high diabetes risk with other antipsychotics such as Seroquel is also very high.  There is the problem of weight gain caused by antipsychotics, again, Zyprexa being the worst of them, which in turn causes early death and may be mistaken for “unhealthy lifestyle.”  There are other devastating side effects as well.  Chronic constipation can make you miserable.

Having shaking hands (hand tremors) mars you for as long as you have this side effect.  How?  The social effects are devastating.  Walk into a store, get your wallet out to pay for what you’re buying and suddenly, the cashier sees that your hands are shaking.  I went through this throughout my late twenties and thirties.  You smoke a cigarette in public, and everyone sees the cigarette shake.  You pay your bus fare and the bus driver watches your shaky hands as you slide your tokens or bills or coins into the slot.  You sit and eat with someone and your hands shake. This side effect alone gives off an impression of incompetency.  Trust me, I lived this way for years and when folks saw the shaking hands, it was all over. You don’t get a job, not even a volunteer job, especially a job with kids.  You don’t get a date.  What’s going to happen when you appear before a judge with shaky hands? What’s going to happen when you reach for a pen to sign a lease?  What will the banker think, when you ask for a loan?

I did a reading of a piece I wrote that won a writing contest.  I stood in front of the audience and trust me, every time I turned the page, the paper shook…well, it was rather obvious that it wasn’t just “nerves” that was causing it.  I won the contest the next year and they didn’t have me read my piece aloud in front of the audience.  It came time for the winners to read and I waited to be called up, and they never called my name.  I mentioned this to a friend/teacher who confronted the contest organizer.  She said to me, “We thought it would be too stressful for you.”  I told her what she had done was devastating to me.  I’m glad I had my teacher/friend’s support.

In the case of Clozapine, you get the “dropsies.”  I’m sure the drug company has ways of keeping this out of their statistics charts.  I mean, what do you call it when half the time you hold a cup of coffee (water, juice, soda, tea, etc) in your hand, and boom! it’s in your lap in an instant?  I can only compare it to falling asleep for a split second, and dropping something, only this happens to a patient on Clozapine every single day even when they have had a decent night’s rest.  The “coffee in the lap” syndrome is well known among patients.  I had it.  People would sigh and tell me to hold onto whatever I was drinking with two hands.  What the heck else were they supposed to say?  I was a chronic, anyway.

So yeah, the “dropsies” and shaky hands (hand tremors) can mar you, and you probably aren’t even aware of it.  Everyone who sees your shaky hands, trust me, judges you immediately.  Potential friends will decide to stay away and not be friends.  If you have shaky hands, a lot of people turned their backs on you long, long ago, folks that you have forgotten about, folks that could have been great friends but your paths were turned apart.

Because of shaky hands I was turned down from job after job, turned down from volunteering, and when I did volunteer, was placed into low responsibility positions in which I felt worthless.  I would sit there in a job interview practically sitting on my hands, or clenching them to keep the shakiness from showing, but then, while off guard, a hand would make the tiniest of gestures, and the whole interview would be blown.

Okay, a step further. Tardive Dyskinesia.  You knew I’d mention this.  I started to get Tardive Dyskinesia but caught it in time and now, nearly a year after stopping the last of my antipsychotics against doctor’s orders cold turkey in fact, I have no signs of TD.   I stopped Risperdal 3mgs a day and Abilify 20 mgs a day cold turkey in July 2011, believing that because I ate next to nothing and my weight was ridiculously low, these drugs were not having any beneficial effect and were not metabolizing properly, anyway.  No one denied that these drugs don’t work if you’re not metabolizing ANYTHING properly.  It was actually not a big deal, looking back.  I didn’t go into any huge psychotic episode. Many consider anorexia nervosa to be a psychosis.  (Lately, I’ve been thinking that it is.)  Antipsychotics have never taken away my anorexia psychosis.  They pushed Abilify on me later on and again, looking back, I don’t see that I received benefit from it.

So what I want to say about Tardive Dyskinesia is that if I were to show up at a job interview with Tardive Dyskinesia, say, in my tongue, with my tongue sticking out grotesquely at odd intervals, smacking my lips and jerking my torso, do you think I’m going to get that job?  Will I be turned away from housing?  Will I be denied access to my children in a child custody case? Will I still be able to drive, having these involuntary body movements?  Hey, I highly doubt it.

These are examples of the many ways that taking medication shortens your life.  If homelessness, for instance, is the cause of someone dying young, how many people were turned down from housing because of side effects of medication?  Oh yes, you may argue that this is flat-out illegal and therefore never happens.  Bullshit.  It is happening in YOUR town.

Anyway, all psychotic illnesses suck and the known, established, acceptable “cure” sucks as well.  I say “acceptable” because taking medication is where you belong in society.  Safe from harm.  Supervised.  With your kind.  In the corner.  On the fringe.  Locked up, either behind physical doors or chemical restraints.

This page at NIMH (National Institute of Mental Health) states that 10% of patients with anorexia nervosa will die of the disorder, that is, of the many complications of this disorder including malnutrition, starvation, suicide, heart attacks, etc.  Anyway, here’s the link:

http://www.nimh.nih.gov/about/director/index-eating-disorders.shtml

There has been a complaint that NIMH spending on schizophrenia research (I believe I read this in Torrey’s book) is about 13%.  This is a 2001 book.  What kinds of other research is NIMH doing?  According to the Eating Disorders Coalition, only 21 million is spent on eating disorders research, including NIMH’s research and everyone else’s.

It’s just so weird that a disease that folks assume affects only the rich is not being researched!  You’d think that rich people’s bucks would pour into these research giants and fund all sorts of projects….Hmm, I think the rich folks’ charity bucks are going into finding cures for people who have money to pay for expensive treatment.  I can’t imagine that equine therapy, a component of these renowned eating disorders treatment centers, is cheap.  What the heck do you feed a horse?  Veterinary costs must be unreal.  Grooming the horses, housing the horses…yeah.  These places even have swimming pools!  This is where the dollars are going, folks.

There are indeed revolutionaries out there.  People who agree with the stuff I say about eating disorders “treatment” as it is now.  I’m not talking just about us LOWLY patients, but providers, too.  Many of these are ED survivors themselves, but often they are people who do alternative types of therapy and see the idiocies in the system, just like I do.  I have contacted some of these individuals and have gotten some response.

One such response was from a nutritionist, actually an RD, whom I will not name, who was trained, yes, at the giant Mass General, then as soon as she left, rejected all the bullshit and carved out a path of her own.  She and I have interacted and I’m sure she’ll back me on a lot of what I’ve said.  This person holds a prestigious position in the field of nutrition but of course doesn’t work in a hospital.  Hey, she’d be considered a kook!  She’s in private practice, which is a tough place to be if you’re going to try to be a provider who accepts insurance.  I couldn’t afford to meet with her as a client.  We haven’t been in touch for a while.

Another person I know of, whom you will be hearing about I think (if she gives permission) is an amazing revolutionary and also a nutritionist.  Her theories are right on.  She is also an ED survivor.  Well, gee, how else are you going to get such an incredible understanding of this disease than by living it?  She is bold and brave and out there.  She defies everything you’ve been brainwashed into thinking about this thing “recovery.”  One thing that she says is that if it sucks, it ain’t recovery.  Well, duh.

MY DREAM

Let’s get all these people together.  All the people that think differently.  All the people that see the idiocy in the status quo.  Folks all over the treatment totem pole.  Folks who are oppressed in treatment situations, folks who have survived ED treatment. Folks who never had treatment either because it wasn’t available or they refused it.  Folks who were told that it’s time to “go home and die” and were turned away for this reason or in some other way told they were “untreatable” or perhaps, a “liability risk.”

Let’s get together with people in the treatment field.  People who are activists just like me, but have training and therefore a lot more social clout than I do.  People who have broken away from the status quo.  Revolutionaries in their fields.  People trying new and better therapies that treat the patient as a human being.  Trust me, the medical profession is trying very, very hard to shut these people up.

Well, folks, let’s not shut up, okay? What is this called?  Occupy Eating Disorders?  Naw, that has an awkward ring to it.  I’ve got some thinking to do and some calls to make and e-mails to write.

As they said when I was a kid: The People…United…Will Never Be Defeated!  Heck, I remember marching around chanting that slogan.

Now more than ever.

Feedback and comments welcome!