I have a brain disease called bipolar disorder and have often experienced psychotic features. My symptoms have often been severe and debilitating. In learning to deal with this disease well enough to live a rewarding and productive life, I have relied heavily on mental health professionals. I could never have had a decent life without a lot of help from them. I owe the profession a great debt. Yet I expect to go to my grave carrying a great deal of resentment toward the profession in general.
Although I suffered many years with recurring psychotic episodes, I have been mostly symptom free for thirty years now. I am pretty high functioning. My wife and I have been married more than 41 years now and have raised three children who all all now healthy, responsible adults. I have earned a BS degree from a major university, held down demanding jobs, performed them well and retired comfortably. I think it fair to say that I possess at least average competency and intelligence. Yet many mental health professionals I deal with treat me with infuriating condescension.
Clearly they are the “all knowing doctor” and I am the somewhat defective patient badly in need of direction from them. Thirteen years after my first institutionalization in a state mental hospital, I was told for the first time what my diagnosis was but only at my insistence. The attitude seemed to be that there was no point in telling me anything about my disease. Can you imagine never being told you have diabetes or anything about the disease?
In fairness to the profession, things are much better now. Most pros try to develop good two way relationships with their patients these days but I still encounter a very annoying degree of condescension from professionals.
Since retiring some years ago, I have become a very active advocate for the mentally ill. I am a trained NAMI connections group facilitator and In Our Own Voice presenter and I sit on the board of a community center for people in recovery from mental illnesses and represent this organization on the board of Mental Health America Pueblo.
The community center board is roughly 50% consumer and 50% professional. At least two of us consumers I would consider highly intelligent with much to offer. We get to speak up at meetings and seem to be listened too, but we both wonder if anyone really cares what we have to contribute. Most decisions are made by the same three individuals-two professionals with many years experience at the local state mental health hospital and one non-consumer with a lot of experience with non-profits. The views of the non-consumers just seem to carry more weight than those of the consumers.
I was asked to represent this organization on the board of Mental Health America Pueblo where I am the only non-professional sitting. My experience there has mostly been positive. However, a recent event perfectly illustrates the source of my frustration.
We are awarding the founder of the community center, who has suffered much of his life from debilitating mania and depression but has done some awesome things to help people just the same, the appropriately named Phoenix Award. At last week’s board meeting I was asked by a fellow member to provide a file and picture of this man. Two days later, at a community center agenda meeting I was told that the managing director had a good picture that he would send to my email from which I could then forward it to the individual who needed it.
Later I received an e-mail from the MHAP board member asking when she would receive our submission. I forwarded this, wrote the bio and sent it along with a request for feedback and the picture to the managing director, intending to send it to the MHAP board as soon as he returned it to me. He replied that a different MHAP board member had emailed him and he had promised to send her the bio and picture the next day. He would review what I had put together.
The following day he copied me a bio and picture he had submitted. My piece had been discarded and and a different biography was submitted in place of the one I wrote.
I don’t know if this seems like a big deal to most, but I am furious. When for more than 50 years one has been treated as just a little bit inferior and just a little bit subservient this kind of thing is grating.
This other board member from MHAP had gone around me (even knowing that I had been asked for this material) to my organization’s leader who in turn rejected my work with no explanation. What this says to me is that I am not on the board to be a full functioning contributing member but rather as a feel good figurehead. “Oh aren’t we tolerant to allow one of these people to sit on our board.”
Maybe I’m overly sensitive but having turned 70 recently, I’m just too old to accept being marginalized and insulted.