December 19, 2007

Why I Do This Site

Yesterday I got a check from a reader along with a nice note, which I thought I'd pass along.

"I value access to your blog--wonderful information, clearly laid out. I lost 10 years to meds and illness and abuse from those claiming to help. I want to change, expose, do anything to help people avoid what I went through. I am at a loss on what to do to convince the nation (world?) that we are sensitive, sentient human beings, not boogiemen."

Well, we sure aren't boogiemen. And, I think the best way to avoid people getting into trouble with the mental health industry--by which I mean avoiding the downside to it all--is to recognize that psychiatry, as it's now practiced in the US, is one of many technologies to help human beings with psychological and emotional crises, and its technologies should be used sparingly and with caution, especially in the long-term. The only place where I'd alter my view is when it comes to schizophrenia, and even there I have a hard time building an ethical case for the long-term use of anti-psychotics. The meds are just too troublesome and too dangerous for too many people and have not been proven to be effective preventative agents. So it's hard to say that everyone with schizophrenia should be taking them forever. But that's just the ethical case. The medical and legal cases are a bit different.

As for other disorders, the British psychiatrist David Healy has been very upfront in writing that there is almost zero evidence that anti-depressants and mood stabilizers prevent future episodes of various disorders. The implications of that are fairly clear to me. Lithium alone seems to have preventative power, but even there I can only think of one person I know with bipolar disorder who's taken Lithium for years and never had another episode. Balance that with another person I know who played by the rules and took Lithium for eight years. She's on a kidney transplant list as a result.

Why the mental health industry has been able to claim preventative power for treatment with meds is beyond me. They can talk about greater delays to relapse and symptom suppression all they want, but I remain largely unconvinced. If I had only realized all of this years ago, I'd be in much better shape today.

Posted by Philip Dawdy at December 19, 2007 12:01 AM
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David Healy does say that lithium is the only proven medication for manic depression, though I have not seen a study that showed people taking it who never had another breakthrough. On the other hand, whenever I write on a blog, and meds are the topic, I always bring up lithium because the others are even more dangerous. The atypicals kill or cause diabetes or other permanent medical conditions yet they are all the buzz with consumers, due to being pushed by psychiatrists. If you take nothing now, please tell us how that works.

Posted by: Sorrowful at December 19, 2007 07:22 AM

Your site is incredibly important to many of us. I too blindly trusted the mental health industry as did my mother before me. Now, not so much. As for your friend who took lithium and never had another episode, how can anyone be sure this person would have had another episode without the lithium.

Ever since I started taking iron supplements, I haven't gotten a speeding ticket but I don't think this means the supplements are keeping me from getting tickets.

I have a friend who has taken lithium for 20 years, swears by it. His kidney problems have begun. I always doubted he was bipolar.

Posted by: Sally at December 19, 2007 07:54 AM

"Why the mental health industry has been able to claim preventative power for treatment with meds is beyond me. They can talk about greater delays to relapse and symptom suppression all they want, but I remain largely unconvinced. If I had only realized all of this years ago, I'd be in much better shape today."

This is why your blog is important. Because of what you endured, learning through experience, is what makes this the best mental health blog. The blog gives people who have walked in all different shoes, yet suffered [to at least some degree]similar pain and injury, loss, etc. via psychiatric medications, and the industry itself, a place to have conversation and understand none of us are alone in this. The fact that there are mothers reading and writing here who have had children die as a result of psychiatric medications, or mothers like me--patients, friends, families all able to share stories and extend sympathy to others as a result, of this blog, is in my opinion a definite reason to say, "Thank you Philip."--stephany

Posted by: Stephany at December 19, 2007 11:01 AM

So bipolar disorder is really a personality disorder - congratulations! You've just invented one more layer of stigma the rest of the world can pile on top of us. As someone with the same ugly diagnosis, I don't understand why you would even go there.

You are also dead wrong, unless you are willing to just through the proper use of terms out the window. One reason I am able to accept the diagnosis, and why I feel I need the meds for the time being, is that my feelings and behavior during episodes seem so out of whack with my own sense of my personality. I suspect the same goes for most of us. By definition, that is the exact opposite of a personality disorder. (Or am I "nitpicking"?)

And finally... bipolar a gift? I don't buy it. Maybe it is a gift for people who have had relatively mild symptoms, but I consider it a curse. I am also a lot more productive and creative since I've been on meds than when I was not, and I know others who say the same. I've also seen at least one study finding that something like 3/4 of artists with bipolar disorder surveyed said that they were either as creative or more creative while on lithium or depakote - although I admit that antipsychotics might be a different story.

Posted by: Cornelius at December 19, 2007 11:31 AM

thanks for your thoughts cornelius. actually some psych docs are starting to talk about bp as a personality disorder, both when it comes to depression and hypomania. as i noted in an earlier post on this, mania itself is a totally different ballgame. for me, i think the personality disorder bit is something of metaphor in a placeholder sense for now. but how would a personality disorder be more stigmatizing than being dubbed 'insane'?

as for depakote/lithium use and creativity, my own experience is that it didn't dampen creativity--they just aren't "numbing" agents in the way that anti-psychotics are, and anti-deps can be for some people. but to each their own.

Posted by: Philip Dawdy at December 19, 2007 01:45 PM

I have been diagnosed with Schizophrenic Paranoid, Schizophrenic Psychosis, and finally Schizophrenic Depression. Under your (Philip Dawdy's) concept of what is right, my voice of dissent would not exist. I would be medicated into silence.

Posted by: mark p.s. at December 19, 2007 01:48 PM

i will chime here here to make a comment that my award winning artist/photographer/reader and writer...can not read, paint, take a photo or hardly think on Clozaril. My Lamictal hasn't dampened my personality, and yes, that is what my pdoc referenced to, when he said, "I don't want to medicate away your personality". Needless to say, when I wasn't on Lamictal I had quite an over-achieving artist mind, like how many wine corks I could hammer into my kitchen wall. I don't care what ppl call me, but I'd take go-getter, funny, over-achiever, quirk any day over 'insane'. really, we are all mixed bags and meds or not, happiness is the goal right? or a life where we have not lost ability to truly do what we love? this is why I can chime in that anti psychotics don't cut the mustard. I will check in when my daughter finally can read a book or write her own, or crank out another painting. life on meds life off meds, ,,,,,no one has answers.

and this blog is still the best. so are the comments.

Posted by: Stephany at December 19, 2007 04:21 PM

Philip, et al,
I would be veeerrrry careful about tagging yourself with the moniker of "personality disorder". Here's what my boss in voc rehab told me about clients personality disorders:

"You don't want to accept anyone with a personality disorder, like alcoholics, borderline personalities and such. These people never change and they don't get better. They'll never get better. You won't get a (successful) closure out of them. So make up a plan with provisions you know they won't accept and close them as 'unco-operative'."

Having a personality disorder is considered a permanent kiss of death in some "helping" circles. Having a mental illness is a stigma; being deemed to have a personality disorder is a Stigma. Logic has nothing to do with it. Please be careful.

Best wishes (really),
Sherry
PS: By the way, the agency for which I worked had serious production pressure. It was like a factory, only we produced "closures". The clients were little widgets manipulated along an assembly line. They have different catagories for different outcomes, according to where the client fell off or remained on the assembly line. Some folks interviewed but didn't apply; some applied but failed to follow through; some made a plan but didn't implement it; some completed their plan, signing the proper paperwork each step of the way, and went on to "graduate" as successful closures.

We were assigned an annual closure goal and each month were graded by how many clients were in each category. Production pressure was intense. They had it down to a science how many people needed to be in each category in order to meet that annual goal. The worker is pressured relentlessly to meet those goals.

It is a tough, survival-of-the-fittest system, but the fact is lots of people really DID get back to work who wouldn't have. I live in a rural state and still run into former clients who are still using the equipment we bought them or are in good health from that surgery we paid for. Beats being on disability (I know whereof I speak).

Federal bureaucrats operate entirely by the numbers. Numbers are the only thing you can really quantify, they're easy to measure, etc., etc. Empires (number of workers, office space, etc.) are built upon numbers--numbers of clients. Our caseloads were needlessly bloated to "keep the numbers up". At some point I figured out a caseload of 70 clients pruned from the bushes of a bloated caseload of 300 was more efficient. Once you cleared out the people who really did NOT want services you could focus on those who did. My agency was not amused. Indeed, didn't replace me when I left. They parcelled out my clients to bloat up the caseloads of other workers.

Call me crazy, but this ain't no way to run a railroad...

Posted by: Sherry at December 20, 2007 06:17 AM

That's what this is, this is a mental health system train without tracks! It's a box car covered with labels. Schizophrenia, though I am positive will be looked at more harshly that borderline personality,[at a job interview] and most importantly, it's the meds that don't work to get those with SZ back on track! oh yeah, I forget, we have nothing that works, no correct label, or medication. But the drug companies and doctors sure don't seem to be hurting for $$$.

Posted by: Stephany at December 20, 2007 12:54 PM

Neuroleptics are pure evil.

I was force medicated involuntarily with Lithium and Perphenazine as a teen for 6 months. As they did it to me, they told me again and again. "It's for your own good! You need this medicine to ever get well."

They were wrong. I not only did not get better on LC and Trilafon. I became more desperate and suicidal.

I was on LC for Bipolar 1
The perphenazine was for Schizophrenia.

Today, I am meds free, side effect free and loving it.

I also have not had depression, mania, delusions or voices in ten years.

All without therapy or drugs.

I will never forget the taste and smell and liquid trilafon. It was the smell of death. It was on my breath, in my sweat.

Being on neuroleptics for me was like experiencing chemically induced brain death. It was a punishment, a sentence. To death of personality.

We need to get off this soul-less paradigm of drugs. Your mind and body are inseparable.

If you take psyche meds. You are harming both body and mind. There is no way in hell you will ever achieve holistic health or mind body wellness when you are poisoning your brain and body every single day.

Neuroleptics are just chemotherapy for the brain.

At age 15 I had to fight for my right to go off meds and stay off them in court. With a Writ of Habeas Corpus, I beat my social worker in court and won my freedom from forced medications.

Posted by: Jane at December 22, 2007 11:16 AM

Jane, you said "At age 15 I had to fight for my right to go off meds and stay off them in court. With a Writ of Habeas Corpus, I beat my social worker in court and won my freedom from forced medications."

To which I say: Hot damn!

I just read your comments about SAD, which I have. And yep, I live in New England. I have trouble using the light box because it's a PTSD trigger for me. (It's close enough to some of my abuse to be almost impossible for me to do regularly, even though I *know* it helps with the SAD.) I know I would do lots better in a better climate, but that's not an option at the moment.

I know moving to a better climate has helped your SAD immensely. But I was interested in the timing you mention and would like to delicately ask if you think moving away from your family of origin is part of why you've been doing better for the past decade. I ask because you've mention moving ten years ago and doing better for ten years and also because removing myself from my own family (difficult to do, yes) has probably saved my life. Don't want to project my crapola on to you, but always like to compare notes. I hope you understand.

Best wishes and a big "hat's off to ye" for standing up for yourself at such a young age.
Sherry

Posted by: Sherry at December 25, 2007 06:19 PM
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