Sunday, November 7, 2010

Rerun:Some Early Thoughts on Anatomy of an Epidemic

It's come to my attention that a lot of controversy has been generated lately by certain bloggers over Robert Whitaker's book Anatomy of an Epidemic. Let me put it this way. In my life time, I will rank it as one of the best non  fiction books I have ever read, the other one being "And the Band Played On". I hope Mr. Whitaker's book does for the mental health movement what Shilt's book was able to accomplish for the gay movement. Here is my review of Whitaker's book. If you haven't bought any holiday presents, I would consider purchasing this one as a gift.


Robert Whitaker's latest book "Anatomy of an Epidemic" came out last month. I had been listening to it on tape (Audible) since I have problems reading print at the moment. Yesterday, the blessed package came from Amazon. His new book, and the reissue of "Mad in America". 

I made myself a sandwich, poured a glass of ice tea from the fridge, and sat down, to read it again. And from the minute I started, I realized one thing. The publisher made a huge mistake. The book should come with Kleenex. 

Like the spoken edition- which is  the same book - it's the type of non fiction book that will make you cry. Weep, copiously. And after your tear ducts are dry, I felt like I was watching one of my all time favorite movies- "Network", living the "Mad as hell" scene. I would have indeed gone to the window and shouted, but my downstairs neighbor is 88 and deaf, and ... what good is shouting "I'm mad as hell" if no one can hear you? 

I'm too numb right now, and it's 5 am in the morning to sit down and write a review worthy of the New York Times Book Review. Let's just say this. 

In the book he interviews many, many people, especially in the last page. I am fortunate thanks to Facebook, to have emailed  some of them and they inspire me.  

And I think about the ones in the book as true cases, especially the children, who were also hurt and maimed. Including the one I love the most- ME. In the fact that we were not killed outright but, as a friend said in a phone call, - "our brains were raped".

I don't know who is pro-Big Pharma or against it, and frankly it isn't salient here. What I want everyone who sees this is to arm themselves with knowledge, every time they get a script from the doctor. The doctor can be your GP, Gynecologist, Dentist, or Shrink. You get a script, ask what this is. What are the side effects. Please ask. Go home and look up the drug on the Internet. Knowledge is important. Don't be a sheeple. This can save your life. 

 I was brought up by a father who worked for Big Pharma, and believed in Whitaker's "Magic Bullets". You take the script from the doctor, and take it. No questions asked. Doctors are just a fraction below G-d. If you don't question , you really are taking Blue and Red Pills. Within ten miles from where I grew up, and about 3 miles from where I am now, is a town called "Milltown". My mother always beamed with pride as she reminded her girls in the back seat of the car this town we were driving through was named after a wonderful drug from the 50s. (Whitaker describes the town and the drug in detail in the book as well). 

I had only one doctor who, upon giving me a script for Lamictal back in 2001, told me about the rash. If I get any kind of rash, call him immediately. If I cannot reach him, go to the emergency room. No other doctor, from childhood on, ever did this. 

The first drug I ever had a problem with was Prozac, which I started in 87, about 12 months after I was diagnosed. Prozac was was the wonder drug of that age- on the cover of Newsweek and The New York Magazine at the same time.  The side effects were awful.  I couldn't sleep, I had nightmares. Then the fevers, ringing in my ears, and the sensation my skin was moulting and I couldn't stop scratching. My whole personality changed, I went from being a mild Casper Milquetoast type person to someone looking for a girl fight. Then I was told to quit the drug cold turkey, and fortunately, for me, I was put on both Zoloft, and later, Paxil, and fortunately, no side effects. Not like the Prozac. 

It wasn't until I was reading this book I saw i was not alone with side effects from Prozac that I experienced. And when I told the doctor how I was feeling on it, he told me to keep staying on it, and ride it out. Two psychiatrists later, I was finally moved off Prozac to something else. 

And now I sit, 2 years ago almost dying from Haldol, where every muscle in my body fell asleep and I had to re-learn how to do everything. Walk, talk,eat, even go to the bathroom. Yet in the book, over and over again- Haldol- muscle fatigue. I was as bad a case from this as possible, the worst would have been dying. I survived. I wouldn't wish this on my worst enemy. To this day I am haunted by something a nurse told me when my muscles started to wake, that my screams from the pain were exactly like the ones from burn victims. 

Three years ago, one P-doc put me on Remeron. After about two weeks on that I got so suicidal I checked myself into the hospital, because I reckoned, I would rather be shot up with Thorazine and be alive and get off this drug then stay home and I know I would suicide. While I was detoxing off Remeron, the same pdoc wanted to put me into Trenton Psychiatric Hospital due to the side effects I was experiencing with the meds. I fired him, and left the hospital against doctors orders. Alive. If I was put in Trenton Psych, I fear I would still be there, like a scene from "Cuckoo's nest" 

And being on lithium, since 87- with small respites on Depakote and Lamictal- well, I just wrote about loosing my hair. I am constantly sick to my stomach, and can only eat bland food. Anything spicy- no. Nexium has become a magic pill for me to be able to eat anything.  But the worst- is knowing that sometime between now and September I have to go for another bone marrow biopsy, and it's just a matter of time before I have leukemia unless by some miracle my white blood count should stop duplicating and go DOWN. Which it hasn't since 2003, it's been going up in some kind of Mathusian equation I haven't been able to crack.

I said this book belongs on every one's bookshelf. It does.This book deserves to be on the Times Top Ten list. But no matter your stance- pro pharma, anti pharma know this.  But please, question the doctor for everything. Don't be blind trust, there are good ones and bad ones out there- but you are the most important person in the world, and you must know every option out there, and question. Likewise, there are good drugs out there- Penicillin, for example has saved lives. But question. Question everything. Question authority like you haven't done since you are 18-19.  The life you save will be your own, your husbands, child's or parents. You owe them and yourself the chance to live long and prosper. 

14 comments:

Stephi said...

Oh this was a scary post! I have been on my meds for nearly four years and I can't explain it but something has changed and I feel like it is working against me. I'm not really sure what to do at the moment because off them I am a maniac.

I will make it one of my top priorities to read this book. I was pro- pharma when I first went on my meds. Now I am neutral to anti- pharma. It is scary how much freedom those people are given in the name of money and the hold they have over doctors and psychiatrists. I had no idea such a relationship existed (ignorant me) until I noticed a fancy Lexapro clock in my doctors office and noticed she had really nice Lexapro stationary. Great marketing! Luckily I did have the sense to research that drug before I took it.

Thanks for this I would never have found out about this book if I hadn't read your blog.

I hope that you are doing better Susan, I am still thinking and praying for you:)

susan said...

Hi Stephi,
I feel the same way, I was pro meds and the longer I am on them, the longer I feel like you do.

Granted, there are good meds out there. I just wonder why out of all the countries in the world, Americans have the most psychiatric drugs prescribed to them then in other places.

I would love to know what you think of this book.

Pam K said...

Reading this made me realize how fortunate I am with my current Psychiatrist and my (unfortunately) former doctor. Both of them are great about listening to me, outlining possible side effects, and taking me off things when I say they aren't right for me, no matter how long I've been on them. No "give it a few weeks and see if the side effects get better."

That said, I'm almost obsessive about checking out my drugs on my own. Standard description and side effects type stuff, an explanation of how it does what it does, then Google for other people's experiences.

Personally I'm pro-pharma, but I think this has a lot to do with the fact that I'm pretty sure meds are the necessary course of action for me. Unfortunately, I have yet to find an alternative that let me function even close the way my meds do. But like you said, that's really irrelevant, since what we need is awareness, education, and the willingness to speak up.

I'll have to see if I can get ahold of this book. Sounds like a good read.

Mary LA said...

Because I see Big Pharma in Africa, I'm anti. And ignorance is a killer. So many friends have long-term effects that nobody knew about when they were put on drugs.

Take care Susan.

Sallyo said...

Thanks for posting this. I'd like to get the book.
We've been lucky with our current drs. not over-prescribing drugs for my husband, but some former ones really did a number on him. They gave him a bunch of prescriptions without explaining clearly what bipolar is or what the side effects were. It took another 10 long years before he was willing to get help.
He's on lithium now with an occasion risperdol for psychotic episodes. He needs them right now, but I do worry about the long-term affects, and what will happen if he can't take the lithium any more.
We definitely have a long way to go in understanding and effectively treating mental illness issues.
Thoughts and prayers going your way, Susan.

The Blue Morpho said...

An informative and interesting review of the book. It is important for all of us to be as proactive in our health care as we possibly can be. And if we are too depressed to focus, we need to find someone close to be an advocate for us. I'm fortunately that I do not need many meds to be baseline functional, but I do take Celexa, and have no desire to be without it. Tried that experiment and it failed. But I don't expect it to solve all my problems - there is no magic that makes things all better. I do a plethora of other kinds of therapy, as well as watch sleep, diet and all the rest. I do hope people can come to realize that so much of mental illness needs a chance for deep reworking - there is no magic that makes an abusive childhood go away, for instance. Every person needs an individually tailored plan for constant healing - a plan that adjusts with time. Meds are a part of it for some, and not for others. I just hope no one gives up on a possible line of help before they give it a try. Like the strange physical therapy I'm doing for my PTSD. It actually works, and works well, although the theory behind it seems so odd. I'm glad I gave it a chance. Anyway, thanks for the thought-provoking review.
Adventures in Anxiety Land

tracy said...

Wow. This is the first time i have read your blog and what an amazing post. The things you have been through and the horror of the side-effects of the meds...i am so very sorry. i hope by now you have found something that works.

i am pro-med, as when i finally sought help, about 4 years after i should have, i was in very bad shape, severely depressed, terrifying obsessions, very bad anxiety, etc...and the female psychologist did nothing, did not even mention a Meds consult...and she knew how bad off i was....she had the tests to prove it. Anyway, suffice to say, i was very green at therapy and it took me almost 11 months to finally leave for an MD. Sorry to blabber on...

Thank you for a great blog....favorited!


i apologize for being "all about me."
Be well,
tracy

Hope Despite Depression said...

Thank you so much for bringing this book to my attention. I can't believe I never heard of it before?? I am definitely adding it to my list!

I feel the same way about drugs - if I HAVE to be on them I want the one that has been around the longest (therefore there's more research, etc. on it) - but there are times when I do have to take new ones which scare me.

I'm fed up to here with doctors handing out scripts like candy - and that we should be GRATEFUL! That's what really gets me.

I've lately started taking natural supplements and truly believe they are helping in some small way at least... I know I'll never be off all the drugs I'm on - but I completely agree with you - SPEAK UP for yourself - ASK QUESTIONS... I wrote a blog post about being your own best advocate... because these doctors screw up way too often (at least they have in my case - and in yours too it sounds like)...

I can't believe how much you have gone through in your life and how much you continue to go through - I truly admire your strength and attitude... at least from what I can tell by reading your posts... and I think that says a lot about a person...

Hang in there - and thanks for the book tip...

Christine

Susan said...

Great post Susan S.! I love your writing style!

I have owned Whitakers book since it came out and still only can read bits and pieces of it as I am reading about my own life and the price I paid to believe this lie. Not only myself - but my children. I can only cry so much these days and still try to build a life from what I was left with after 15+ years = nothing. Thanks for sharing on this.

The Depressed Reader said...

For myself, I have been on Paxil for almost 4 years, raising and lowering the dosage several times. I am in the process of tapering off it and hope to be done with it completely by the end of the year. I'm also on a couple of meds that are only available in Japan, but I will worry about them after I've got done with the Paxil.

In my case, I am not convinced the Paxil was ever really effective. Perhaps it had some placebo effect, but at least in my case, it wasn't much help. And although I didn't have the nasty side effects others report, I am being very careful in slowly going off it.

Syd said...

It is so important to participate in our own medical treatment by reading and understanding what is going on. Doctors are not gods and make mistakes all the time.

Erica said...

Loving your blog! I really believe that I need the meds I take to be stable enough for my family, but I hate it when doctors push new drugs on you. I don't want something without a track record. I don't want something with a $35 co-pay. I haven't tried all the "proven" meds, so why do they push untested meds on me? I'm pretty sure it is because of all the advertising and pushing the drug reps do. Not okay!

If anyone is interested, you can read my new blog at
http://morethansurvivingbipolar.blogspot.com/

mandy said...

Oh my God!!it freaks me out. .such a barbaric act! I'm fortunate to have someone like Dr. Cruz:)

moreheads said...

Susan
Wishing you a speedy recovery, really really fast and complete.
Getting thru is never heroic when we're doing it, courage is about all the things we push thru inspire of the difficulty, pain, etc. Our body and mind is such an amazing combo, when they are fighting for life they rock.
I know it's been awhile, life takes us away sometimes....

Positive for today: You are alive! :-)

Gentle air hugs,
Ravin

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