Tuesday, December 21, 2010

Saying Goodbye To My Support Group Hello To A New Kind of One

This past weekend I sent a note to the President of my local support group who is also, as chance would have it, the President of the State chapter as well. As of January 1, 2011 I won't be on the board of either group and unable to facilitate.

Seven years ago I started going to these meetings. And in all honesty, (since I've never been anything but honest in this blog) I haven't gotten much out of them. A lot of war stories that bind us together. The same problems with family and friends, and work issues.

But what I noticed over the years is striking, and upsetting. I've seen so many people come in from a long extended stay at a hospital, either private or state. They are on many many meds. I'm not a doctor, but is there a reason that someone has to be on five, seven, nine, different psych meds?
I've been on as much as nine at a time myself. Plus other pills to clear the side effects from the psych meds. Upset stomach, migraines, vomiting, even Miridia because one doctor was worried about all the weight I had put on in six months from Seroquel. (Note: He did not tell me to get off the Seroquel, though).
I've seen people come in and beg for answers about ECT. I've gone down on my knees and told them not to do it, to wait a while longer before engaging in such a procedure. I've been told to shut up because they were hell bent on getting this treatment and wanted to hear good things about it. And I can report, sadly, that those in the group who had it, had nothing happen, it wasn't the panacea it was touted as.

The older I get the more cynical I get. Maybe I've spent too many months in hospitals, in the trenches. I've seen the bad and the ugly. I don't know how many useless tears I've shed over this.

But this year, I hit the breaking point. To paraphrase Ginzburg, I've seen the minds of my generation destroyed. I've seen folks come in who were functional, who, now because of the drug cocktail they are on, unable to work and now on disability. I've seen the functional reduced to suicidal zombies, with any hopes for the future dashed and gone. I've seen people  go from fully fully functional to unable to do the simplest tasks for themselves, and if they didn't have the good fortune to have a husband/partner to care for them would be non compos mentos and most likely in a state hospital or nursing home for the rest of their lives. And I've seen those whose bodies have been shattered and practically destroyed from a suicide attempt that failed.

I've seen some successes, but those seem to be the people who are just on one drug not a cocktail, and rebound because they have a good therapist, or just rebound on their own when the depression lifts on it's own, or just by sheer grit and determination to ride it out and conquer it.

I'm tired. In the seven years I've been going, I cannot handle it anymore. I am mad as hell. Maybe it comes from my near death experience last month, when I was brought into the hospital and told last week I had actually started to die. Or maybe it's because I've been reading voraciously over the last year, books by Breggin, Szasz and Whittaker, among others.
Or maybe I just feel that people with the psych label on them are treated as second class citizens, not as human beings. This flies in the face of the fact that some of the greatest most talented and creative people in history have been labeled bipolar, schizophrenic, or depressed.

Right now I have to take care of me, and I have a long road ahead with physical recovery. When I am able, though, I want to spend the time with other groups I tend to agree with now, like Mind Freedom, Icarus and Psych Rights. I know someone personally who will say I've gone to the dark side, but someone has to speak up for those who cannot speak. I was grateful this past month when I could not speak, others spoke for me and got the word out.

Fourteen years ago, when I realized that shots of vodka and Everclear in my Snapple wasn't going to quell the suicidal ideation, I got sober.  I had hit bottom, lost everything I owned and was practically homeless, spending 18 hours a day in a 24 Hour Club. And one of the things I learned in AA was to pay it forward.

It's time for me in the New Year to do that. Pay it forward.I'm going to miss the old one and I'm still going to be an activist. It's just a different kind.


Anonymous said...

Welcome to the dark side...

As the nature of reality is paradoxical I can assure you the dark is the light.

or, also, through the dark one reaches the light.


Stephi said...

You go girl! what you are doing is very brave. It is time that people took responsibilty for themselves and not sit back while doctors increase their meds more and more. It is scary how much influence pharma companies have on doctors.

I got a massive shock when I had to go to hospital for two days last week and was horrifed at the rubbish heap they had dumped right outside the psychiatric ward. It was almost like they thought that the people in the psych ward didn't know any better and wouldn't mind rubbish being dumped outside their window. It was awful. So I agree with you when you say people with mental illness are treated as second class citizens. It is just so sad that the same is true in a hospital.

Please take care of yourself. I hope you the baby steps towards recovery are going well.

Much love

Diane D'Angelo said...

Congratulations, and thanks for speaking your truth.

Anonymous said...

Thanks for sharing and being the survivor you are.

susan said...

Thank you all for the kind words, Anonymous, Stephi, Diane and Anonymous.

I need this today.

Syd said...

It is good to have an advocate for patients who don't really know what to do or how to determine what the best thing might be. Too many people simply go along with the program and don't do any investigating to see what will work. ECT by the way, was the only thing that worked for my mother. I am grateful for that.

Wendy - Caleb's Mom said...

I almost hate to say this, but I'm starting to think it would be better to be an alcoholic than on all these meds. I've been on 23 different combinations. Last week I went to the shrink to talk about having to go to urgent care due to dehydration, vomiting, stomach pain and was told it most DEFINITELY NOT the meds!!! Oh, I guess it is just in my head....
I'm joining the cynical support group - know where it is?

Stephany said...

WOW to denounce DBSA takes a lot of guts!!

Ana said...

I'm here Susan. Just had to tell you I'm here.

AdmGln said...

I think it is important to do what you feel is best for yourself. Good job deciding one approach wasn't working for you, good luck on the new one.

The Depressed Reader said...

Hi Susan,
We all have a certain amount to give, and it sounds like you have given it, at least in your current organization. I haven't been involved in any kind of mental health advocacy groups but have experience with other activism and know it can take its toll, even if it is for the greater good.

Most people just complain and don't try to do anything productive. You've tried to contribute as best you can, and now it is time to move on. You're a fighter - I look forward to hearing about your next step.

betasheep said...

I was forced to take Risperdal and depakote for a while. I tried to voice my concerns to my shrink about the sexual dysfunction these drugs caused--because that seemed to be the only thing these drugs did for me. He blew it off, as though that had nothing to do with the drugs. But this was indeed listed in the PDR as a side effect of the risperdal, I said. He got kind of huffy and intimated that I had no business reading such things. No one tells me what to read, I said. He eventually had to drop the involuntary outpatient commitment, but I had been off the drugs a long time before that. He couldn't tell the difference.

Keep up the good fight, Susan.

Mark p.s.2 said...

You wrote " I am mad as hell."

Raw hate only lasts for so long to keep someone moving.
Intelligent fighting for justice for others who are innocent , endures I think.

Anonymous said...

Dear Susan,

I loved this post - I feel your anger when you say that "us" psych patients are treated as second class citizens... I too feel that way and it angers me - and I'm trying to fight that stigma... I'm trying to figure out what little old me can do... but if we all do something - no matter how small - it's better than doing nothing...

Thanks to you making me aware of the book by Robert Whitaker (Anatomy of an Epidemic...) I am educating myself more and more and I thank you for that...

I love your site - keep up the great work!!!

Take care!

howard said...

I'm glad to sense that passion back in your voice, Susan. I hope it rings that way for many years to come.

Speaking for those whose voices aren't normally heard and advocating for more thoughtful treatment (both professionally and societally) of mental illness are both fantastic things.

D Bunker said...

I couldn't be Prouder of you Susan.

Mildred said...

Wow, there is a great deal of useful information in this post!

Related Posts with Thumbnails