LWV, NAMI Forum on "Mental Illness 101"

[Hidden Stillness]

I attended a public forum on Saturday afternoon, called "Introduction to Mental Illness 101," put on jointly by the League of Women Voters and a group called NAMI, "The Nation's Voice on Mental Illness," an advocacy group that helps families navigate the mental health system, and that advocates for health-coverage parity. There was an introduction to the topic by the head of the local NAMI group and a representative of a local LWV, a featured speaker, Dr. Manuel Tancer, Chair of the Dept. of Psychiatry at Wayne State, Detroit, and then a panel of four people describing their own experiences with mental illness, and the help they got.

Mental illness is very common, with some 20-30% of Americans affected, 45-50 million people having an actual diagnosis, and yet it is completely ignored by health insurance coverage, and by policy-makers and legislators. For all the pretense of a "modern, enlightened world" full of "happy, corporate go-getters," the fact still is, even today, that there is great shame and feeling of failure, at a discovery of mental illness; that people do not even get treatment because, as the psychiatrist put it, "They don't want to get the label." People hide their symptoms and problems, suffering alone, thinking that everyone else is happy, doing well, that everyone else's relationships and jobs are all going along great, and then there is "me, alone," who can't handle things, a loser. It is hard to get teenagers with mental illness to take their medications because they want the illness to just go away, "They want to be like everyone else." They still wish for a time before all this started: denial is a big part of refusal to take medications. Media portrayals still, to this day, feature the phony "mentally ill mass murderer," even though almost all are non-mentally ill angry abusers. Mental illness--even to the extreme of people almost never using the phrase publicly--is still stigmatized.

The mentally ill suffer from isolation, both because their friends and family desert them, unable to cope or relate to them anymore, and because of the progression of the disease. Long-term inability to keep a job or friends, is a major clue for possible mental illness.

The audience seemed to be almost entirely made up of mental health professionals, and family members (parents) of people with mental illness, in either the psychiatric or legal systems. There were many focused questions on anti-psychotic drugs, old vs. new types, etc., and the outrage of insurance denials. Part of the program referred to the bill in Congress to get health coverage parity for mental and physical illlnesses; I think it was Senate bill 558/the Parity Bill, (which I suppose would be the Wellstone bill), which the League of Women Voters supports. They referred to organized oppostion to the bill, by both Blue Cross Blue Shield, and unions, as claiming it would cost too much, when really denying care so people go to emergency rooms, can never hold jobs, etc., is clearly much more expensive right there. They also compared the lack of funding for mental health groups, and their great need, with a disease such as AIDS, affecting a mere 1% of the population, but with huge amounts of money spent on research, care, education, etc., etc., because of loud advocacy groups and corporate media support.

Maybe the best part of the whole program for me was hearing the stories from the people on the panel with mental illness, and what they went through, and the questions and stories from families in the audience. There is a very sad world of struggle and suffering going on out here, and most of it is unfunded, not covered, and people who desperately need help are not getting any, and don't know where to turn. People on the panel described what kinds of stressful incidents precipitated the onset of their depression, or schizophrenia: for one it was the loss of her mother and the arrival of a horrific new boss at work; for another, moving away to a university. There was some discussion generally as to what may be "triggers" for the onset of some of these things, and although the psychiatrist attributed it almost entirely to biology, there is a huge environmental component, too, and much is still unknown.

I think the most moving incident during the whole forum was not even someone teaching anything about this topic, but came when a women from the audience, who had been taking notes like me and many others, stood up to tell her own story with her adult schizophrenic son, and to try to get help. She was an older woman, (60s?), intelligent and well-spoken, with a kind of nervous, frustrated anger, at wits' end somewhat, very sympathetic, who seemed to me to really be the true voice of all the millions of families facing the crisis of a family member with mental illness, and the complete lack of public health resources available, leaving them to fight the entire unresponsive system, alone.

It was a long-term story, of so much built-up anguish, that it was not a coherent question at all, but a long story that shifted from incident to incident, problem to problem, jumping from one time and place recounted, to another. Her son has been a schizophrenic since age 23, and is now 48. When it struck, she did not know what to do; finally got help, admittance to a hospital. Here is where you get into the real, nightmare world of dealing with mental illness--one of these stories that always comes up, and you don't know what to do with it. Her son told her that on the way to the hospital, he had "been neaten up by the ambulance driver," after telling the driver he didn't like the music the driver had on. The driver stopped, pulled over, and beat the victim up. She was so upset and angry telling this story, she asked "Was it a hallucination; was it real?" She didn't know what to do about it, (and as we all know, mental illness patients are very often targets of violence). Shockingly, at this point, one of the people running the conference interrupted her, asking, "Where is the problem?" like--get to the question. This is exactly what families suffer! She went on: the bill for a two-week stay at this hospital was thousands of dollars (can't remember exact figure; may have been $3,000), which they cannot afford to pay. This adult son wants to try to keep a job of some kind, but can't find anything, and when the Mom went to her priest, she overheard the priest saying later, "But who would have him?" recalling it as one of the cruellest things she had ever heard. The story was just a classic example of a parent being totally crushed by all the pressure of trying to care, long term, for a mentally ill family member, with endless crises and little help--a scattered story that is all over the map, because that is what it is, really. She vowed at the end, that she will be an advocate for her child and for this issue, and always fight. When she sat down, the whole audience applauded loudly, including me.

There was some further talk about how much potential progress is wasted by these advocacy groups not being coordinated and working together, sometimes being unaware of each other's planned forums and other events, and sometimes wasting money on duplicate-type events or publications, and missing opportunities to coordinate things to reach larger groups. This also seems pretty endemic to many advocacy groups and issues. Just then, after the forum had been going on for about 2 and a half hours, another psychiatrist barged in, asked twice for the first psychiatrist, who had already left, and was then invited by the organizers to be on the panel. This psychiatrist was just a classic "arrogant, know-it-all/old-world" male doctor who "runs everything," and almost immediately, most of the audience got up and left. I wondered if they knew this psychiatrist personally or were going to leave anyway. The psychiatrist began a very boring lecture on knowing when to admit patients, etc., and I got such an unpleasant feeling, that I got up and left, too. The event was over by then anyway. It struck me as somehow appropriate, that an arrogant self-absorbed psychiatrist, should have killed the discussion.

This is a hugely important issue for so many reasons, and the area League of Women Voters intends to take up the issue of mental illness, its societal effects, and the lack of insurance coverage, as more of an issue from now on--thank God. This is a sad and unpleasant issue sometimes, but if it can be addressed--which no one on the campaign trail does--there might be actual improvment of something. The only real let-down for me was the inexplicable omission of anxiety/nervousness/phobia/social avoidance as part of the topic, when this is the most common thing of all.