From childhood on, our son’s life was difficult. Learning and friendships were difficult, resulting in feelings of inferiority and failure. In his teens he began using alcohol and drugs; he was involved with the law; he spent a short time in prison. In spite of our best efforts to help him, things went from bad to worse. He had a variety of jobs, all of which ended in termination, often because of tardiness, absenteeism, and difficulty with fellow employees.
Although one of our son’s employers required that he see a psychiatrist to determine the reason for his erratic behavior, my husband and I had never considered the possibility of mental illness being its cause. He was nearly forty when he lost that job. I wrote a letter to the psychiatrist, who immediately scheduled a series of written and oral tests, and convinced our son to have us involved. The doctor suggested that the problem seemed to originate in the prefrontal cortex; that is was likely congenital; and that it was something over which our son had little control. He advised us to apply for disability funding. I made an abrupt turn from nagging to advocacy. A great deal of my time since then has been devoted to the interminable process of negotiating the disability funding maze–for someone who looks and acts quite normal.
Shortly after that crisis, I was invited to be trained as an instructor for NAMI (National Alliance on Mental Illness), an organization begun in 1979 by a small group of parents in Wisconsin. NAMI has grown into a strong nationwide organization with state-level branches in every state, and hundreds of city and community affiliates. It has become a formidable advocate for mental illness, working tirelessly against stigma. NAMI provides a variety of peer-taught courses for individuals with mental illness, family members, and providers. In addition, there are support groups that meet regularly.
Although things are gradually improving, a huge problem is still the stigma associated with mental illness, most of it based on ignorance. When we hear of someone with diabetes, we likely don’t ask the disciples’ question in John 9: “Who sinned? this man or his parents?” Unfortunately, though, that suggestion is often asked in some form when someone exhibits symptoms of a mental illness: poor personal choices! poor parenting! And solutions are suggested: tough love! punishment! consequences!
Some people believe that individuals with mental illnesses are likely to be dangerous and violent. This perception is often influenced by sensational media accounts of violent crimes in which someone is vaguely referred to as being “mentally ill.” Actually, people with serious mental illnesses are more likely to be victims than perpetrators of crime. In rare cases where someone with a mental illness has become violent, he likely is not receiving treatment.
Thoughtlessly used language also contributes to stigma: nuts, crazy, psycho, schizo, insane. If you’ve overheard such insensitive remarks, and maybe even used them yourself, you’re certainly not going to tell anyone that you’ve begun to hear voices, or that you are having suicidal thoughts.
As a result of all this shame and blame, and even guilt, families and their ill loved ones who attend NAMI classes and the support group often say, “I’ve never shared this with anyone. My family just doesn’t understand.”
For those with a mental illness, the consequences of stigma can be worse than the illness itself: having negative thoughts about yourself; pretending nothing is wrong and refusing to seek treatment; having work problems; having difficulty finding housing; being rejected by family and friends; being subjected to discrimination or harassment.
In the last ten years, I have learned a great deal. I now know that mental illnesses are serious medical illnesses that affect one in four families. Mental illnesses are disorders of the brain in much the same way that disorders in other organs result in other medical illnesses. The causes for mental illnesses are very complex–often a combination of genetics, biology, and life experiences–most of which are beyond one’s control. It’s no more reasonable to blame a person for being depressed than it is to blame her for having a stroke or ovarian cancer. Just as we say, “She HAS cancer,” instead of “She’s cancerous,” it’s preferable to say, “He HAS bipolar disorder,” rather than saying “He’s bipolar.”
Recently our son’s psychiatrist attached a label to his disorder, but I’m not sure that it is accurate. One of the frustrations of diagnosing brain disorders is that there are no reliable tests. Although progress is being made in brain-imaging and genetic testing, there is currently no blood test or MRI that can yield a precise diagnosis. Brain disorders are diagnosed primarily on self-reporting by the ill person. Although input from family members can be helpful, HIPAA can make that difficult because the law prohibits providers from sharing information without the permission of ill persons over eighteen. It’s important to know, though, that family members can send helpful information to providers without such permission.
Although the effectiveness of medications and therapy may often help to confirm the suspected diagnosis, the difficulty of arriving at an accurate diagnosis is compounded by the fact that medications and therapies are not all equally effective for everyone. Most remedies work slowly, over a period of weeks rather than days, and side effects are often unacceptable. As a result, an ill person may be diagnosed with a variety of labels before receiving adequate help.
When should one get help? Here’s one suggestion. Major depression is more than feeling down because of some event or situation in one’s life. Then you usually know why you are feeling down. Going for a walk or having coffee with a friend can make you feel better. But when you don’t know why you are feeling so sad, tired, and disinterested, and nothing makes you feel better, you need help in the form of therapy or medication–usually both. You can’t just “snap out of it.” Don’t let stigma create self-doubt and shame. You have a medical condition. It’s not your fault. Effective treatments are available. Begin by seeing your family doctor.
Do you live in NW Iowa? The NAMI Sioux County Support Group has been meeting in Central Reformed Church on the first Tuesday of every month since January, 2008. Ongoing education is provided in the form of speakers, videos, book reviews, etc., and there are opportunities for confidential sharing. Individuals with mental illness and family members are always welcome to join us. For more information about the support group and the courses that are offered in Sioux Center, contact Shirley Matheis at email@example.com. Beyond NW Iowa, find other NAMI support groups on the NAMI webpage.