June 21, 2005



Being undiganoised for 33 yrs. and learning to cope,live,and be productive and happy. Verses 3 yrs. of all different kinds of medications, that's simply not working, but have made me worse. I'd much rather go back to what I know rather than not knowing who I am.

Posted by: Melissa Johnson at June 28, 2005 8:57 PM

I quite agree with Melissa, I was undiagnosed for 42 years. I can only think how many experiences I would have been discouraged from trying or prevented from participating in had I known about my illness.
I was fully compliant for 10 months and experienced the full force of side effects without any positive symptom reduction from the medication. I requested to come off of the medication and have been medication free for about 6 months.
I still experience symptoms, but I have returned to functioning and utilize such coping skills as I can to manage my situation. I have asked for therapy and biofeedback to aid in self management as I am unwilling to risk more side effects and the destructive impact the medication has on my ability to function. I have met with a great deal of medical resistance...and I find it ironic that my doctor resisted my suggestion for cognitive therapy while pushing me toward medication. I do not understand why it would be so terrible to try to learn coping strategies in therapy, which has no destructive side effect; while it is preferable to risk medication with life threatening side effects and uncertain efficacy rates. Perhaps this is the denial and lack of appreciation of my illness that so many of us are accused of? I merely want to work, function, and be who I am. If the medication worked and allowed me to do that, I'd use it gladly. As it does not, I think its perfectly reasonable to decline it in favor of the hard work and struggle of attempting to cope with my symptoms on my own or with the support of friends.
I do not ride the wave...I steer my boat through storms and breakers with all my strength and concentration...through exhaustion...with whatever skills I can learn.
I'd like to arrive on shore without being told that it was a fluke, warned that I am sure to end up on the rocks, or being told I'm not able to recognize the water from the dock and need someone to do it for me.
Better yet...you might shout some encouragement and raise a light so I have something to steer for...

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