I just could not resist this one. At the NAMI meeting at the Drop In Center they always ask for volunteers to organize and chair their “connections” meetings, need someone to do their newsletter and all phone calls I’ve made to them (five in all) have gone unreturned. “She’s trouble,” She’s got Tardive Dyskinesia and she’s Angry…” I know because well, you’ll read it in the email I just sent them, accusing them of discrimination against me for being slightly vocal about Tardive Dyskineisa. I don’t mention it everywhere I go…but I do speak up. It’s real. I have it. There are ways to delay or avoid it and still take your medicine. That’s what I want to get across. But now I’m asking..how do you think they will respond to this email? I would lay odds they will continue to ignore me like they have the past two years.
Dear David and Edna
I haven’t heard anything since I did the telephone interview and left David a Followup message on ‘starting small’ to work towards a common goal. I feel that because I have Tardive Dyskinesia and occasionally mention it, I am being discriminated against.
This happens in the medical and psychiatric community as well. I am the face of a frightening, at times grotesque statistic, even though I’m asymptomatic and pretty happy about life.
I’m not angry. it happened, It took three years to get help and I did a series of friendly, low key videos for International Bipolar Foundations’s Youtube page how to find that ‘needle in the haystack:” the neurologist who is a movement disorder specialist who further specialized in Tardive Dyskinesia, comfortable treating the mentally ill. Not all neurologists are, my friends.
I had a nurse practitioner tell me she wouldn’t take me on for fear of ending up in some bitter lawsuit if I got worse under her care and have been thrown out of every office where I simply sought a second opinion. I’ve had the same collaborative psychiatrist for seventeen years and have stayed out of the hospital for that long as well.
When I’m in bipolar depression remission I am still able to go places, write and do telephone outreach, so I take my lumps when I get them. But having volunteered for years at Rebel’s and suddenly being deemed ‘too unstable’ to do so again when their other volunteers pass drugs in the parking lot and call me to tell me the FBI or CIA is after them, well, one has to ask if I’m too unstable or just too threatening.
I don’t mean to be any trouble. It’s too bad that you can’t even find the time to call back. It’s disheartening, to say the least.