A few days ago, at the Orange County Mental Health Associations “Meeting of the Minds”, I attended a workshop on caretaker-patient-provider partnerships sponsored by our local NAMI. The material was very interesting and I sympathized with the panelists. Caretakers, they pointed out, can be a helpful part of the team that brings the patient to a place of recovery. They deserve to know what they can do to help the patient and this doesn’t mean that they have to know all the patient’s “dirty little secrets” as they characterized them.
But a few things struck me: First, at least a third of the panelists promulgated a “no fault” model of mental illness. This belief has been spread without challenge or acknowledgement of the studies that link the onset of mental illness to emotional abuse and bullying by NAMI. Though one speaker did allude to this, most of them adopted the model as applying in all circumstances, including their own. I can’t say for sure if they were telling the truth — I give them the benefit of the doubt — but I also know of plenty of abusive parents who use the shibboleth to hide their own history of family violence.
A few months ago, a spokesperson for a “mental health advocacy organization” likened support groups to appendectomy patients performing surgery on one another. I said nothing at the time, but the remark and all the errors it entails have led me to consider how my support groups help me.
The claim that support groups seek to replace medical treatment is erroneous. DBSA South Orange County, like many other support groups of its kind, has issued a disclaimer indicating that our peer-run support groups are no substitute for a doctor’s care. This fact by itself defeats the glib assertion made above. We don’t try to cure people of their depression or their bipolar disorder. There are people with better skills for doing that than we.
What we offer is a safe place where people can talk about their struggles with the illness. Doctors and therapists know how to treat, but they don’t know what it is like to undergo treatment. They don’t encounter stigma. They have not experienced the catastrophic loss of community that can happen when one is diagnosed with a mental illness, when friends and family members run away.
The mentally ill person is not a child. I have had the experience of would-be helpers who treated me so. When I attempted to describe what I needed, they argued and belittled me for needing help. I felt very alone and one result was that I stayed away from the church where this person was not only a member, but an officer of sorts. It was hard for me to treat him with charity. I turned my back when he greeted me afterwards because I could not stand his hypocrisy.
We are sensitive about being patronized because of our condition for the same reasons that African Americans are sensitive about race. No one wants to be excluded on the basis of a condition that he cannot help. No one wants his condition denied. No one wants to feel cut away from the body politic. What we want is for people to take us seriously whether or not we are in episode.
Many of the problems that people have with the mentally ill have to do with communication. Those who wish to help (and those who do not want to help) believe that the objective of interaction is to get the mentally ill person to follow a treatment plan or pull herself up by her bootstraps or realize that it is “all in your mind”. (“Have you tried not being depressed?”).
A few weeks ago, I took a survey by Marya Hornbacher, author of Madness: A Bipolar Life, which probed my feelings about mental illness. She has written back with more questions. Here they are with my answers:
Do you consider mental illness a chronic physical disease? Please explain your response.
There’s no other explanation for it. I have tried willing myself into better moods or trying to stop my impulsiveness, but they were just too massive a problem for mere force of mind. It was like trying to prevent my cold from generating mucous or insisting that my pancreas produce more insulin. I tried, believe me, I tried to stop the tidal wave of emotions that consumed me but they kept rolling over me and I drowned. When I stopped seeing it as a character flaw and began treating it as a disease of my brain, I got on medications. While my nasty habits didn’t vanish overnight, the moods that drove them achieved a halcyon state in which I was not thwarted in my efforts to change. Just as my heart medications lowered my blood pressure, so, too, my mood stabilizers calmed me.
Diagnoses come to me long after the illnesses have wrecked my life. I received the label of “Attention Deficit Disorder” a few months back when I asked to be evaluated for it. My psychologist passed the information on to my psychiatrist who put me on Vyvanse.
I like to say that my mood-stabilizers put down a floor that allowed me to put up a house based on healthy changes in my life. Vyvanse created doors and windows that let air and light into the rooms.
The effect of the medication was apparent on the first day. I accomplished many tasks that I had been putting off and kept the motivation going for the rest of the week. When I started running out of things, I looked around the condo and found others to do. I compiled a list of future projects.
One by one, I checked them off and added more.
I have to rebut these when they are said by family members, fellow patients, and random members of the public. Every one of us who lives with the condition has heard some if not all of these time and again. You might even have a few of your own to add. You may note that I don’t include “It’s all in your head” (though the issue of faking is covered below). It is all in my head! Bipolar disorder is an organic brain dysfunction and the brain resides inside my skull. So I don’t count that a myth, just a misapprehension of the truth.
Here are my twelve most common myths:
Bipolar disorder is just something psychiatrists made up so that they can get rich.
Not too long ago, a Fox Radio commentator told a caller that she had been duped by her psychiatrist. They just made it up to get your money, he told her. She begged to differ but he was having none of it. Even when he was forced by his employer to apologize, he equivocated.
There are a few things wrong with this belief. The first any person with bipolar disorder can tell you: the highs, the lows, the paranoia, the hallucinations, and the delusions are all too real. Physicians have observed the disease in patients since the time of Hippocrates. And patients have suffered, suffered mightily.
Rethinking Positive Thinking: Inside the New Science of Motivation by Gabriele Oettingen
I don’t know how many times I have listened to people in support groups declare that they have decided to apply positive thinking to their lives and then watched them crash and burn. People declare all kinds of objectives for their affirmations. They will lose weight. They will master their drug problem. They will control their anger. They will grow rich. Money will come to them without effort. They will find a millionaire and marry him. They will find a fabulous new job and leave all the cares of the old one behind them. Some goals are realistic. Others are simply fantastic.
Studies show that plain old positive thinking drags people into a depressive rut. Oettingen cites the example of her work examining the attitudes of East Germans versus West Germans. East Germans spend a lot of time thinking positively. They see themselves as rich, as coming into opportunities of a lifetime which change their life situation for the better. But they still end up at bars trying to drink their melancholy away, and they never get anywhere with these plans. West Germans set reasonable objectives, put in the work, and succeed. Even though their goals are less grandiose, they are happier than their former Communist counterparts.
Kitt O’Malley put me onto a research project by Marya Hornbacher who is writing a book that “will profile the lives of people who have a mental illness or who work in the field, and she’s trying to develop a deeper understanding of how the public views mental illness.” I couldn’t resist throwing in my own two cents. Because I have a long track record of never being included in such studies, I thought I would share my answers to her questionnaire here for your consideration and discussion:
Has mental illness affected you personally? If so, how?
Yes, I live with bipolar disorder, PTSD, and ADD. I lived in quiet torment for many years, occasionally bubbling over in rages that left my wife emotionally overwhelmed. This left me with feelings of deep guilt, but I didn’t do anything at first because I had been told that suffering was part of life and I should just buck up and endure it. When I finally did seek help, I was diagnosed with major depression and put on Prozac. Because I was “cured” the next day, I sought no further insights into my diagnosis until I came to the brink of committing suicide at age 47.
Many people in bipolar support groups counsel the newly diagnosed not to feel shame for things they did while they were in episode: it was the disease that did it, not them is the reasoning. This cleaving of the self, I think, does not help us get a handle on the illness and its effects on others in our life. In fact, it strikes me as downright irresponsible: you never have to make amends for anything you did.
Denial of the damage we cause is linked to this exculpation due to mania. Some say that making amends has nothing to do with apologizing. Warped logic causes it to mean nothing more than admitting to yourself what you did without making restitution or apology to those we harmed while addicted or in the throes of mental illness. I find this cheap recovery and I am suspicious of anyone who flaunts it.
Recovery from bipolar disorder is almost like a religion or an ethical system. Certain devotions must be part of our lives if we are to recover our balance.
- I shall hold myself accountable for all works of my body and my mind including those which I wreak when I am in episode.
It is important, I feel, not to separate the illness from ourselves. We did the things that happened while we were in episode. There was no second soul seizing control of our bodies. Our mind is a stream that flows continuously, sometimes over rough ground, sometimes in placid stretches, and sometimes over cliffs. We own all these states of our being.