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I kept my schizophrenia a secret for 20 years. But maybe my honesty will make it easier for the next person to share.
Most of my adult life I have lived in a bubble along with my husband. We have protected and kept our life very private, even from close friends, in order to avoid judgment, ridicule, jokes, and special treatment.
When I say special treatment, I mean people behaving toward us in certain ways not based on our personalities, accomplishments, or behavior, but on assumptions surrounding a diagnosis. Last week, we decided to pop that bubble in a very big and public way.
My husband and I both posted an article on Facebook that was written by a mentor of mine about my courage. The courage she was referring to was my honesty in my writing groups about an illness I have battled since my twenties, that illness is schizophrenia. My writing groups were the only place where everyone was aware of my diagnosis. I simply couldn’t write poetry and memoir without revealing details of my mental illness, because much of my writing has to do with situations around having and struggling with schizophrenia.
Before my husband and I went public with the secret we had kept for over seventeen years, we had many discussions about how people might react and how we’d respond. We had some near sleepless nights. We were very anxious because we felt our whole world was about to change.
During the past week we have received e-mails, calls, texts, Facebook messages, and letters in the mail. Most people have been very supportive at least on the surface. I say that not to diminish their support, but to be honest. There is so much misinformation about schizophrenia (like that it’s multiple personality disorder, or that people with schizophrenia wear tinfoil hats, or do other bizarre things) that people respond from ignorance rather than understanding.
It is true that you can see some people with schizophrenia living on the street talking to voices only they can hear. It is also true that some people with schizophrenia are being treated in jails instead of hospitals. But these scenarios simply point to a system that is broken and not to everyone who has schizophrenia. The people I know with schizophrenia are trying to live as normally as possible while struggling with a brain disease.
Unfortunately, mental illness is more common than most people know or admit. The National Alliance for the Mentally Ill (NAMI) reports that one in four Americans will develop a mental illness in their lifetime. Those numbers definitely suggest that everyone reading this knows at least one person (probably more) who has battled with, or is currently battling with, a mental illness.
We have come a long way in accepting depression. And because of some very high profile people, we have come a long way in accepting bipolar disorder, but we have not moved forward much in regards to the stigma surrounding schizophrenia. Schizophrenia is still wildly misunderstood, and the people who suffer from it (openly) are often left out, or pushed out, of normal social situations.
On a daily basis I am subjected to people making jokes about hearing voices, people making jokes about paranoid delusions that people with a mental illness might actually experience. Of course the words psycho, nuts, crazy, schizo, wacked, mental, loony, etc. are all part of our common vocabulary.
I stayed in that bubble for twenty years because I was afraid that the world would judge me. I was afraid that everything I said and did would be considered a symptom of my illness rather than part of my personality or part of my character. And to be honest, in the case of many people, some of my worst fears have come true.
But even with that, I’m not sorry that we popped the bubble. I am now free to be me, both in public and in private, and I have the chance to use my life and my experience to help fight the stigma that left me in hiding all those years.
Maybe my honesty will make it easier for the next person to share. Hopefully, I can and will be a voice that helps pave a new path for those who want to live out in the open.
(this article was previously published in Role Reboot)
Rebecca Chamaa writes poetry and nonfiction. She has been published in PsychCentral, Transition, Pearl, City Works, Serving House Journal, and Structo Magazine. She is currently working on her first book.