This is a letter to another person who has tardive dyskinesia and is quiet about it. She’s smarter than me. She realizes it scares people. I’m writing her about being stigmatized and discriminated against by my local drop in center and local Nami. This is not the first time I’ve looked at this issue. For all of you people who are trying to advocate, help others, sometimes they don’t want our particular voice to be heard. I took her name out of the letter and am reprinting it and asking you…should I let NAMI national know about this situation or let it lie? I’ve already cried ‘foul’ locally in a very measured, calm manner. The problem is trouble begets trouble. What would it help? Would it result in more doors being shut in my face? My local Nami is Broward County Florida, by the way. This is my way of asking you: What should I do about this?
Buzzfeed published a list of thirty books on mental illness. My book is beginning to just come pouring out of me. I added bipolar hope blog and a one-off on Mindful Management of Mood Disorders-DBT to my list of publishers. When I saw this list, because I had gotten my first list of books from you, naturally I thought of you.
I have a thorny situation I thought I would ask your advice. I want to volunteer in mental health in more than just writing. I am doing a type of telephone outreach developing a database for IBPF and since I’m decent on the phone from years of being a disc jockey and know how to talk naturally, (you just talk and mumble and they get it..they don’t feel ‘slicked’ out..you know?) I am enjoying that.
Here is the situation. I wanted to write a second article about a drop in center that I’d written a first article about. In past, I volunteered for three years with high hospital clearance. I lead a good peer support meeting. I developed an eating disorder meeting, got us in newspaper, showed up until others began tooo..in short the meeting is still running today. I fell off their volunteer rolls. When I asked to be put back on and take the class, I was told I was too unstable. While it’s true I’m verbal, impulsive and sometimes dominant, especialy with people who have thought disorders and are going at a slower speed, I’ve worked on it and have gotten better.
AT that drop in center, there are peer volunteers who have offered me drugs in the parking lot. Others make professional appointments to fix the computer for example and don’t show or call to cancel. I even get calls from paranoid volunteers who think the CIA is after them. I don’t do things like this and I don’t report either. But I’ve run into the same problem with NAMI. I attended a few of their ‘connections’ meetings and was scolded for nodding my head and saying ‘uh huh,’ when someone was talking. They solicited volunteers to lead more support groups. I am really good at this. My calls go unanswered. I tried a third time and filled out a telephone application with the head office volunteer and told him about the problem at “Rebel’s Drop In.” He reassured me I’d done the right thing by confiding in him, as the information would have been relayed to him anyway. They vet us thoroughly. I have been told twice they have no one to do the newsletter. This would be so easy for me and I volunteered. My application has been ignored for two weeks. I followed up with a phone call a week ago and left a message about ‘starting slow and small to work towards a common goal.” it was also ignored. I got an email from them yesterday and cooly responded that I’m aware I’m being discriminated against because “she’s got that.” she’s ‘trouble,’ ‘she’s angry.’
So my email just said, “I’m not angry, this happens to me a lot since I got Tardive and that I understand I’m the face of a fearsome statistic even though I’m asymptomatic. I think it’s the tardive. If I had never mentioned it in a “Connections” meeting I would have been warmly welcomed. I have a strong skill set.
Sometimes doctors won’t take me as a patient, and the ones willing to explain said it was because they viewed me as ‘trouble,’ ‘a walking lawsuit’ a ‘basketcase on too many drugs.’ My own psychiatrist of 17 years says I’m an ‘exotic’ and that people just don’t understand.
I feel good. I had bipolar depression last year from April to Mid july and it was tough. My new antidepressant is hard to keep down, side effect of nausea. But I’m a trouper. I realize certain things aren’t meant to be. I was hoping to volunteer for the drop in center or Nami by facilitating ‘connections’ or a ‘mat pilates’ class. The nearest DBT class is held there. I don’t feel comfortable or supported there.
I wanted involvement with Nami to learn more about things like mental health parity, ballot initiatives, etc. I had wanted to do a series of articles called “Activism Made Easy” giving examples of petitions signable by the click of a mouse. I was hoping to soak up their expertise. I’d be a great grant writer. Maybe I’m meant to write my book and isolate. I crave human interaction, especially with my peers.
I’m at a fork in the road. I’m considering contacting Nami’s national branch and explaining the situation. I am continuing to work on my character defects and off putting personality traits. But I hurt deep inside at an organization dedicated to eliminating inequality and stigma stigmatizing me. It really hurts, M.
So be clear: I’m being discriminated against and not allowed to contribute there in any way even though I could help fundraise, do the newsletter, start and nurture new “Connections” meetings and more. I’m also considered ‘not stable enough’ to volunteer again at the local drop in center. That is also a deteriorating situation. Question is…how far should I take this?