From Cluelessness to Community

What people said when I told them my son had suffered a breakdown.

“He’ll be fine if he takes his medication.” But taking medication was just what he wouldn’t do. He was an adult and since he was neither a danger to himself nor others, we had no way to require he take medication or do anything else.

“He shouldn’t be alone.” He wouldn’t let us near him. He left us standing in the street, calling his name and ringing his bell when we tried to see him.

“I don’t know what to say.” I heard this as, “I have nothing to offer.”

“He’s very sick,” I told a friend.

“He might get better,” came the answer. I had just explained that it was months since Aaron had quit seeing his psychiatrist and thrown out the medication that he had never taken more than intermittently. I knew that the longer he was alone with his illness, refusing treatment, the more likely it was he would continue to live with untreated schizophrenia. What I wanted was for someone to say, “That’s terrible. That must be so hard.” Instead my friend said, “Maybe he’ll form a relationship with a woman….” A relationship can’t cure mental illness any more than it can cure cancer.

Later, when Aaron came back to live with us for a year before he took his life, someone said, “I worry about you. What if your son turns violent?”

“What if your husband turns violent?” I asked. Did I really say that? Or was that what I wished I had said? In either case, I was hurt by her assumption.

These comments were intended to be supportive. Before Aaron’s breakdown, in my state of happy ignorance, I might have been the one making such remarks. Now they made me feel alone with my pain and loss, which were so great that everything hurt during that time. Despite efforts by the mental health community that have reduced the power of stigma, mental illness is still the subject of many misconceptions.

What do I recommend you say to a friend whose relative has been diagnosed with mental illness? First, be gentle. Take your cues from your friend. If she wants to talk, listen. If she doesn’t, bring up another subject. Let her know you’re available to help, if she thinks of anything you could do.

I felt like I was in another world as I responded to questions and comments at a meeting for families dealing with mental illness recently. I was there to read from Losing Aaron, my book about my son’s life, which describes how schizophrenia changed him and our family. All the people sitting around the table had a relative living with schizophrenia, bipolar disorder, a crippling case of OCD, or another serious illness.

It was wonderful to be with people who understood. Everyone knew about the reluctance of people living with mental disorders to take their medications, the paranoia, the depression and mood swings, the lack of insight, symptoms that are so common to people living with mental disorders. Everyone knew about the self-accusations of family members, the how-could-I-miss-it feeling when you finally recognize the problem for what it is. Someday maybe that knowledge will be more common though it will always be true, as Bob Marley says, that “who feels it knows it.”