Tuesday, October 13, 2009

Note From a Consumer

Last Thursday I attended a showing here of Minds on the Edge: Facing Mental Illness. (My last entry showed the promo.) The documentary, the latest in the Fred Friendly Seminar series, is being aired on PBS this month. It uses a format you may have seen over the years in previous installments (since its inception there have been over a hundred):
The Seminars always begin with a little story and a problem that could confront almost anyone. The implications of this problem, whatever it may be, then ripple out to encompass larger and larger issues and trigger ethical, emotional, legal, and public policy questions that are always overlapping and sometimes in conflict. Each Seminar program brings together a carefully chosen panel that contributes professional expertise as well as personal experience to the discussion. As the panelists wrestle with the issues presented in the hypothetical story, they are encouraged not just to say what they think about an issue, but to say what they would do in difficult decision-making situations if they were personally involved. The viewers are along for the ride, emotionally and intellectually, as the story creates a link for citizens between their lives and issues in the headlines that so often seem remote, abstract and unconnected to their day to day concerns.
It's an effective method. Minds on the Edge addresses mainly the problems involved first, in getting persons experiencing a mental illness crisis into treatment (the assumption is that most such persons resist treatment); and second, the way in which the mental health "system" takes care of persons once they do get treatment. I place "system" in quotes because, as the program makes clear, no system exists, merely a jumble of well intentioned but underfunded and uncoordinated efforts by a variety of hospital, outpatient, governmental, and non profit organizations.

You can find the entire program online. It runs just slightly over an hour, and on the whole it's fascinating but pretty depressing.

In addition to watching it on PBS or online, you can watch it at a screening at some church, civic organization, or similar venue. This screening I attended was organized by the local chapter of NAMI (National Alliance on Mental Illness). About forty people were also in attendance. NAMI divides the mental health world into three types of person: providers, consumers, and loved ones. Providers are mental health professionals, advocates, etc. Consumers are people like me; i.e., those who have a mental illness and are therefore consumers (or at least potential consumers) of mental health care. Loved ones are the friends and family -- usually parents and/or siblings -- of consumers. The categories can overlap. Providers, in several instances, are also consumers. I suppose they could be loved ones as well.

By the way, I'm not wild about being called a consumer. Words carry freight. The phrase consumer not only sounds kind of weird to me but also implies that being in treatment for a mental illness is central to my identity. As I hope I've made clear by now, I dislike any phraseology that conflates an illness one has with a statement of what one is. Still, it's plain that consumer was chosen faute de mieux, so I guess I can live with it.

Following the screening was a sort of panel discussion that involved a consumer (who happened also to be the chapter president), a provider, and two loved ones (a father and mother with a son who has bipolar disorder). Early in the discussion it became apparent that most of the audience consisted of self-identified loved ones. I seemed to be one of the few consumers in attendance.

I had learned about the screening following a brief conversation in August at the annual Army War College "county fair," an elaborate event in which dozens of local merchants, non profit groups, etc., congregate for an all day event designed to give the incoming resident class and their families an idea of the services locally available. I had a brief exchange with the people manning the NAMI booth, mentioned that I had bipolar disorder, and offered to join their speaker's bureau if they had one. They did. The most appropriate one seemed to be a program called In Our Own Voice. Here's a description from the web site:

In Our Own Voice (IOOV) is a unique public education program developed by NAMI, in which two trained consumer speakers share compelling personal stories about living with mental illness and achieving recovery.

The program was started with a grant from Eli Lilly and Company.

IOOV is an opportunity for those who have struggled with mental illness to gain confidence and to share their individual experiences of recovery and transformation.

Throughout the IOOV presentation, audience members are encouraged to offer feedback and ask questions. Audience participation is an important aspect of IOOV because the more audience members become involved, the closer they come to understanding what it is like to live with a mental illness and stay in recovery.

IOOV presentations are given to consumer groups, students, law enforcement officials, educators, providers, faith community members, politicians, professionals, inmates, and interested civic groups.

All presentations are offered free of charge.

My first presentation is slated for November 16 at a Family to Family Education Program, a free, 12-week course for family caregivers of individuals with severe mental illnesses.

I have, of course, written in several venues about having bipolar disorder. But, aside from speaking to a psychology class at Dickinson College, this will be the first time I've given a regular talk on the subject. I feel slightly daunted at the prospect. To begin with, I'm fortunate enough to have a mental illness that, compared to what others have to face, is mild. It's a pain in the ass sometimes, but it's never seriously interfered with my ability to function normally. Indeed, I've always felt that from a mental health advocacy standpoint, my chief value is as a high functioning individual willing to say forthrightly that he has a mental illness. People who can keep their diagnosis private generally tend to do so.

As a corollary, I worry that anything I have to say will be a) irrelevant to the situations of my audience; or worse b) will convey the disastrous impression that if I can manage the illness so "easily," then so could their family members if only they applied themselves. The only solution I can think of is to offer the appropriate caveats, concentrate on my own experience, and avoid saying anything that sounds prescriptive. And anyway, the main thing I would want to convey is how impressed I am that they are actively supporting their loved ones -- I mean consumers. Aside from being under the care of a psychiatrist and therapist, I can think of nothing more critical to helping someone with a mental illness manage it most effectively.


Barb said...

The term "consumer" seems off. But when I first sought help, I stuck with the first psychiatrist who returned my call even though I couldn't stand her. Only later did I realize that I have a choice as to who I can see for treatment (well, and a good insurance plan helps, too). In that way, I see myself as a consumer.

ruth z deming said...

hi mark and high marks to YOU for your courage in disclosing your illness. i found you thru bipolarPorch, a great compendium of knowledge, as yours is of helpful anecdotes. i run the leading support group in the philly area for folks w/mood disorders and their loved ones (new directions) and one of our members is today giving the very same IOOV talk for the very first time. she will be sensational and so will you. contrary to what you write where you say you don't mean to tell people they can do what you've been able to accomplish, i'd stress how intelligent many of us are w/bipolar and that with proper support from our helping team we can indeed achieve many of our dreams.

many people, including fam members and providers (horrid word) infantalize their patients and limit their expectations. at new directions, the group i founded after my first manic-psychotic break at age 38, our value system includes 'meaningful work.' one of our new guys who has schizoaffective d/o just found another IT job. another schizoaffect woman is also an IT, while yet another is a bagger at the supermarket. wide range.

i'll be checking your blog from now on, mark. i'm orig. from cleveland, ohio, so you can hear my midwestern twang. our website is NewDirectionsSupport.org. - Ruth Z Deming

Mark Grimsley said...

Ruth, since my early experience with the disorder was, by and large, characterized by a lack of support, I still tend to be impressed by family members who are supportive of those with the illness. But I have wondered, as you suggest, whether in subtle ways they communicate a sense that their loved ones have limits that don't apply to "normal" people. I suspect that in some instances that may be realistic, in the same way that it would be unreasonable to expect me (who has a knee injury that's never quite healed) to run a marathon. But I do think that as a general rule, people tend to live up or down to the level of expectations others have of them. That applies broadly, not just those with a mood disorder.

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