Through 30 years of the “sociology lesson” of living with a chronic mental illness, I’ve learned that there are some painful, nasty, dirty, angry little secrets within MI and the additional baggage that comes with MI. At best we whisper amongst ourselves about these wounds, but mostly we seldom speak them out loud. We won’t or can’t find the words to describe the indescribable pains like:

Some of us who are diagnosed as “mentally ill” are not. We are in fact dealing with grief or sadness or guilt or shame or pain or loneliness, emotions that are normal, human reactions to some of the slings and arrows that our fool flesh is heir to. Many who are prescribed medications, hospitalizations or ECT are being given medical treatments for non-medical situations. (This is especially true for women. I’ve seen so many women in hospitals and treatment programs who are there because the man in their life, their husband/boy friend/father, thinks they’re “crazy” because they have feelings and actually express them. And pity the poor woman who has a history of depression and then gets fibromyalagia, lupus, chronic fatigue or MS, illnesses that are tough and expensive to find and treat. The old diagnosis of “hysterical” is still alive and well, as thousands of women can testify too.)

Some of us who are not diagnosed as “mentally ill” actually are, especially men. I’ve seen so many men who hide their illness with drinking or rage or numbness, taking any title: “alcoholic,” “wife-beater,” “convict,” rather than take the diagnosis of “mental illness,” or seek the help they need. (When the attorney for serial killer Charles Starkweather wanted to plead “innocent by reason of insanity,” Starkweather’s father protested, declaring that his family wasn’t going to take THAT kind of disgrace!)

We no longer blame schizophrenia on having a certain kind of mother, and thank goodness we don’t. But if you are a child growing up with a parent who suffers with untreated mental illness, woe to you.

Forced treatment is a touchy subject between consumers, family and professionals, and there are reasons why certain laws exist to protect people. Many of us know what it’s like to have our own families deny us, be ashamed of us, blame us, abandon us. I know a dozen people who have had their own families attempt to “put them away,” because of fear and shame. But I know a hundred people that have had their lives saved by involuntary treatment after their illness took away their insights and capacity for reason. We who have lived through tough times within The System know how dear our freedoms are. But freedom to suffer is no freedom.

Medications can be lifesavers for some, but when your body weight goes from 115 to 230 lbs. in less than a year because of your bi-polar medications, it’s easy to wonder what’s worse, the sickness or the cure? And when there are so many effective drugs like Prozac and Ritalin, it’s easy to diagnosis every sad person as depressed or every intense kid as ADHD.

Many of us know that if our illness doesn’t break us – The System will. The humiliations and loss of dignity that come from having to literally beg for your life, can be, by itself, soul-destroying and something some of us never recover from. It isn’t always the disease: it’s the burden that comes with the disease.

Sometimes with MI, the only people we’re around are other people with mental illness, or else people who are paid to be with us. There aren’t drop-in centers for people with heart disease or cancer; they’re not needed.

Sometimes we become addicted to our illness, and as we think of ourselves as victims; we become victims. It’s hard to face the fear and change of recovery. It’s scary to “get well,” and hard, hard work. Sometimes letting the inertia of being ill and dependent is too tough to fight, and we choose to stay with the devil we know, rather than face the devil we fear. There is a fine line between “picking yourself up by your bootstraps:” and “seizing your own destiny”. It’s no sin to be hit with one of these terrible illnesses and “knocked to the canvas.” But it’s a great sin to think that’s what you deserve or that’s where you must stay.

There is a pecking order in life, even a pecking order within the disability community itself, with people with MI at the bottom. There is even a pecking order within mental illness, with “anxiety” at the top and “paranoid schizophrenia” at the bottom.

As a “worthy cause,” MI is still “last in the heart’s of it’s countrymen.” Every other charity receives more money, volunteer hours, media attention and political help. The Powers That Be throw us assistance like spare change thrown at a homeless man, just enough to assuage their guilt, or to shut us up and make us go away. The political infighting and lack of cooperation of our mental health organizations doesn’t help, making us appear unprofessional and “flaky” to the “real money” organizations and politicians. I hope that someday someone can tell me why there are 8700 mental health organizations in this country, and only one MS Society? And why MI in MN is covered by the Department of Human Services and every other illness known to man by the Health Department?

We with the illness are not as powerless as it sometimes seems. In fact we hold all the cards. We have the power to injure or destroy ourselves. Sometimes in our pain and hurt we turn the enormous power of the illness on our loved ones, and use it in a tyrannical way to get “revenge” on ourselves, our families, on life.

When you live with mental illness, you are treated differently. You face social disrepute, abandonment by your family and financial hardship, literally to the point of losing your job, simply for having the good sense to seek medical help for a medical condition.

It’s easy get caught in anger and hopelessness. Easy to look at the challenges in The System, but not in ourselves. But by taking the next step and talking out loud about our concerns, external and internal, is how we find some solutions. At the heart of every one of these secrets and pains is inequality and stigma, but we need to speak their real names: fear and prejudice. I believe the answer is education and compassion. We need to teach those who don’t yet understand, open our hearts to those who don’t yet have the answers, speak for those who don’t yet have the words.

Pete can be reached at [email protected]