Date: Mon, 3 May 1999 12:12:27 EDT
From: Sylvia Plowright <sylplow@aol.com>
Subject: [CIN] Fisher thread
To: <cinmhc@maelstrom.stjohns.edu>
  California InterNetwork of M H Clients
reply to Bernie Zuber

Bernie,

Thank you for this much needed comment to balance things out. I hope to hear from more of us who have not "imagined" unwanted altered states. The notion that we have been treated cruelly by a stigmatizing society into a "false belief" that we have a disorder takes me back to the early 70's radical days. I wanted to believe that. I had peer support. I had two hour groups weekly at the Berkley Free Clinic. Many of these peers became my friends. I cycled 76 times before I got the right medications. Had I not had a support system at home, I might have starved or, etc., etc., etc.

Some of us need them. Yes, we can do alternative things to lessen the impact. Yes, we must fight stigma. Yes, lot MD's still don't listen very well and over prescribe. I feel the "other 50% of my 'recovery'" is still happening. This recovery is not about meds. it is about the PTSD brought about by being in hiding for years, all of it .. internalized and external stigma.

I had a rare thing, a doctor who would listen and eventually, (after 7 years of trial and error) through my research I experimented with meds. that worked. I have absolutely had it! It is obvious that many of you might have had a few "whatevers," like my sister who only had three big occurrences of a that killed my aunt and runs through my family like eye color! So you can talk about peer support and go back 30 years to the radical days where society does this to us.

As a working advocate and now as staff at a self-help center, I see every damn day many who are not acting out their stress or simply being the way their docs label them. Some of the meds suck. I encourage them to become educated and learn about safer ones. I have also seen how peer support and how the magic of "victim to survivor" [empowerment] can change many of the inner traumas of being isolated and ill for years. .. meds cannot bring about these changes.

Besides St Johns Wort etc., etc., etc. where are your "alternatives" to medications for those of us who now have a life because they work!!! Of course I'd like to take the magic herb. I do like the notion of recovery verses remission. I do like changing the mind set. I don't like watching Fisher last week saying there is no proof, how he knows the brain bah blah then has to throw in the line. "Everybody thinks I am against medications, I'm not"

I am glad I am not twenty years old again when my world fell apart and I was unable to concentrate or do the simplest things, same time had racing thoughts, did not sleep, eat, or get out of bed. I am glad because if I listen to Fisher tell me nothing is wrong with me, I would want to believe that and end up on the ward, still, not a nice place to be. Or .. my peers could take care of me till it passed. I would still not be able to hold a job for a few decades as my world fell apart 3 to 6 times per year.

Some of you are lucky. Some of you have had only a few "whatevers" or were put away way back when for the wrong reasons. You don't speak for me. I am, for lack of a better term insulted that my life is being invalidated by those who have not really "been there," or it was so long ago they have forgotten. Some disorders are very real. For many folks they only strike a few times.

No I am not a NAMI supporter, am sick and tired of the few terms that battle endlessly such as medical or biological model "versus" recovery. Can't any person come up with anything in the middle that is applicable to the thousands upon thousands of us who are not stupid, are not pawns of the MD's??? I lost 23 years to this "thing" and finding the right medications stopped it. You find something else ala natural and I will take it. For myself, until something better comes along that is organic and natural, the right meds. were 50% of my battle. Now I embrace "recovery" in my own fashion as I realize the tremendous damage done to myself and all the others because of stigma. I like Mary Ellen Copeland's approach to health and crisis planning.

Keep this up and society will once again believe we "do this to ourselves" and any research to find safer less invasive medications or genetic markers will cease. Yes Dan, you were right, they haven't found the genes yet. .. common as they are looking for many such genes for a variety of disorders and it ain't easy.

This is too long but I think many can relate. I run my course, not my MD! (I am lucky there) I had to ventilate.





What will we have to do to be hip in recovery,
take our meds. when no person is looking?


Syl