WE'RE THINKING INCORRECTLY ABOUT SERIOUS MENTAL ILLNESS by Mary Rossell

Eight-hundred-ninety-seven days. That’s how many days it’s been since my son Kevin died. I remember when I counted the number of days after his birth, then transitioned to months and then to years. Now, when asked by others about his death, I give the socially appropriate answer of nearly three years, but I still think 897 days.

Kevin suffered from a serious mental illness. I’m not certain which one as he was given at least two dozen diagnoses during the years of his treatment, often two to three diagnoses at the same time. Even while we cycled through different diagnoses, we assured ourselves that he had good odds to do well. We were pro-active with early intervention. How naive we were.

Through the years, we were often told to wait and watch. The child psychiatrist said, “He’s okay, just a bit anxious. A smaller school should help.” The prodromal psychiatric assessment clinic said his symptoms were “not clearly psychotic, although he seems to have some odd beliefs. His presentation is consistent with an autism spectrum disorder.”

At the later stage of his illness, one of his doctors candidly said to me, “Diagnosis is just a label and doesn’t really help. What we really do is treat symptoms.” From then on, I silently called his team of doctors the “Symptom Chasers.” With the absence of biological markers, all practitioners can do is interview, watch, and categorize based on what they observe. And so, we continued to wait as Kevin continued to be watched.

As months passed, Kevin didn’t respond to the usual treatment protocol of pharmacological combinations, behavioral therapy, and daily structure of activities. One day, when he didn’t want to go out for his daily routine, he asked me, “Would you make a person, with a compound leg fracture, run laps around a track field before you’d fix his leg? No, you wouldn’t. So why are you making me run laps when you haven’t yet treated my disease?” With tears in my eyes I said, “I’m sorry, this is all we have.”

We continued to search for treatment to help him. Over and over, we told ourselves the odds remained in our favor. We had access to the “best” medical care, and we had compliance from our child. We just hadn’t found the right treatment yet. We traveled to San Francisco, to New York City, and, finally, to Boston. In the end, all we really had to offer Kevin was medication, the effectiveness of which has not progressed since 1959, endless talk therapy, and mind-numbing structure.

After 333 days of intensive treatment with a psychiatric hospital in the Boston area, Kevin died in a residential home associated with the hospital. Kevin was 20 years old.

After Kevin’s death, one of his doctors compared his illness to that of end-stage cancer. Perhaps he said it to help make sense of what was otherwise a senseless illness and horrifying death. But he was wrong. Kevin’s illness and death were nothing like cancer. You can accurately diagnose cancer. You can see if treatment is making it better or worse. And you can explain how the patient died. None of this happened for Kevin.

When some time had passed after Kevin’s death, I began engagement with the mental health advocacy community. Each time, I found myself with immense respect and admiration for the tireless commitment of the parents who care for their children with serious mental illness. But I was also disheartened by the fact that, as we enter the third decade of the twenty-first century, the prominent advocacy work for the seriously mentally ill is about treating this community as patients rather than inmates.

How sad that those, who are most vulnerable among us, cannot be treated with basic dignity by our society. While we fight to make progress in releasing people from prisons and placing them in hospitals, we cannot forget that many, if not most, will remain incarcerated within the confines of their serious mental illnesses until we make real progress in diagnosis, prognosis, and treatment.

In one of Kevin’s last emails to his doctors he said, “If you want to understand my experience better, start by thinking about the ways you are thinking incorrectly about it.” There remains a lot for which we are thinking incorrectly when it comes to serious mental illness.