I was speaking with an individual who identified with what I knew about serving children and adults professionally with chronic mental illness. As I shared behavior patterns of individuals with challenging symptoms, he commented on the many similarities between his child and the behaviors I described. The individual described the sleepless nights, the agony of worry, stress and grief that he and his wife endured for years before, during, and after diagnosis with their child. As I shared my experience as a caretaker of those with mental illness from a professional capacity, he said “so you understand what I have been going through.” I responded no, I do not, because it is one aspect and perception to say a person has served the mental health community and quite another to say I am a parent of a child who struggles to learn why they are behaving the way they are and then to learn to cope and manage one’s illness.
Another real world example is the author of a new book, The Collected Schizophrenias by Esme Weijun Wang. She described being in bed and “this giant swarm of flies came in and started crawling on the bed. I was terrified. I was like, ‘Did we leave a window open? What happened? I jumped up and flipped on the light. They were everywhere. Then they disappeared.” She describes her disorder, Schizoaffective Disorder, as “the offspring of manic depression and schizophrenia.” This illness involves mood swings, hallucinations and delusions. Now if this is ‘terrifying’ for an adult to deal with, we can try to imagine what it would be for children and their parents, what grief!
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