Joel, age 51
When I asked Joel what his schizoaffective disorder feels like today, he talked of how sometimes it's a tiny, low level ache in his body that he notices when he's still and quiet. His most symptomatic time period was 1988–98. After a medication change in 1998, Joel's life improved, drastically reducing his hallucinations, delusions, and physical pain of his past. Today he feels “happy-go-lucky most of the time, like a sunny day with soft clouds.” He's been married since 2012, and is very active now—mentoring, facilitating mental health groups, playing keyboard and coronet, singing, and volunteering.
What was Joel's life like when times were bad? He let his hair and beard grow long, he smoked, stayed up all night, and drank a lot of strong coffee. He sometimes slept in a chair in a closet, cigarette dangling between his fingers, ashes falling to the floor.
Joel was a young man of about 20 when he had to start giving up a lot of his favorite activities because of his unmanaged mental illness. One of those activities was playing French horn in a band, where he was first chair. Joel told the story of when he was so delusional during a tour that he thought Bach might be at a concert. The director had to send him home. Joel didn't understand why and was in tears in his Dad's arms.
Sometimes Joel would hear auditory hallucinations making negative comments, like friends and strangers knowing every single one of his faults. He could also be delusional, such as thinking he was famous or that he caused a major tornado and flood that occurred one summer in 1987. The thing is, he wasn't aware that his thoughts were delusional. Fortunately, his parents recognized that something was wrong and they admitted Joel into a treatment center where he was diagnosed with schizophrenia and received medication. His parents were always very supportive of him. In fact, Joel felt that, “When you have a good childhood, it cushions everything.”
To others living with a mental illness, Joel encourages you to, “Hang in there. Most likely it will get better, everything mellows out as you get older.” He added that there are “not enough doctors or support, and the stigma is still bad.” Joel also talked about how TV shows perpetuate the misconception that mental illness results in violence. (1)
(1) Author's note: Only 3% of all violent crimes are linked to severe mental illness. (Gold, L.H., & Simon, R.A. (2016). Mass Shootings and Mental Illness. In Gun Violence and Mental Illness (pp. 81–104). Arlington, VA: American Psychiatric Association Publishing)