I am a simple woman. Most mornings, I get up, make coffee, write my blog, make a spinach, banana, yogurt and berry smoothie, take my medication, and then check in with all my social media accounts. My husband says I am easy to please. Some mornings he gets the coffee ready before I wake up, and I feel as if I have been given a birthday present. There is joy in my heart about routine, and all the little things.
I have paranoid schizophrenia and I know how bad a day can be. I can be overcome by social anxiety, or anxiety in general, or I can have paranoid thoughts that leave me fearful. On the worst days of my life I have been psychotic, a condition of the mind I wish no one had to experience.
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 my diagnosis. Recently, 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 20s, the illness of 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 17 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.
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 almost 20 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.
I don’t wish for a bigger house, a fancier car, designer clothes, or the latest in plastic surgery. I am happy with what I have. I am thankful for a day without voices keeping me from communicating with my husband, or friends. I am thankful for a day without the terror that I have died and gone to hell and there is no way out. I am thankful for a day that I don’t believe I am being poisoned or tape recorded or followed. I am thankful for a day I don’t believe God is directing my every move.
The medication I take is good at keeping me from experiencing psychosis, but there are still symptoms of my illness every day. You wouldn’t know it to look at me, but I have a great deal of paranoia around issues of food and eating. I spend ninety percent of my time alone, because I become easily overwhelmed in social settings. I have a group of really good friends, and I love spending time with them, but I lack social motivation. In fact, all kinds of motivation are a struggle.
It’s okay though. I have a good life. I have a roof over my head, running water, a comfortable bed, access to laundry facilities, transportation and good medical care. I am never really hungry or thirsty. I have someone who loves and cares about me. I am not living among a war or famine. The condition of my life is so much better than billions of people on the planet. I won’t complain.
Sure, living with paranoid schizophrenia is difficult, but so are millions of other things. Cancer is difficult. Diabetes is difficult. Parkinson’s and Alzheimer’s are difficult. Who is to say which challenge is harder? Who is to say who has the more difficult path to walk? We walk the path we are given, and in my case, I look for the good along the way.
There is so much good, like a pink sunset, the laughter of a child, an unexpected call from a friend, French fries with lemon juice and feta cheese.
Mine is a beautiful life, even if some people wouldn’t agree. Too much negativity is a disability too, but it is not one I suffer from.
Rebecca Chamaa’s poetry and essays have been published on Yahoo Health, The Mighty, Role Reboot, Serving House Journal, Structo, City Works, Voicewalks, San Diego Reader, and others. Her book, Pills, Poetry & Prose: Life with Schizophrenia is available online and she blogs at A Journey with You.