The stigma that comes from having a mental illness, especially paranoid schizophrenia, is so intertwined in my life that it is hard to untangle my fears and my hurt from what society, and the people around me, are actually saying and doing. Please don’t get me wrong, although my fear and hurt have darkened my perception, it still doesn’t mean that people are accepting, welcoming, non-judgmental, or compassionate to people with the diagnosis of schizophrenia. Many people are not. The jokes, the labels, the name calling (crazy, mad, schizo, psycho, nuts), and literally dozens of others, still exist in our everyday language and interactions. I read them daily on social media.
When I say stigma is intertwined with my life because of fear and hurt, it is because I hid my illness for over twenty years (even my in-laws didn’t know) and I lived my life in a protective bubble with my husband. I listened to all the jokes about the mentally ill, and silently burned with anger and shame. One Christmas Eve, the pastor of a church I was attending asked the congregation which Christmas carol was the favorite of people with schizophrenia, and then he sang out, “Do you hear what I hear?” It seemed to me that everyone but my husband and I were laughing. These situations, even in religious organizations, and organizations created to serve the mentally ill, are all too common.
Over the last twenty years, we told a couple of people, but we never told my employers, most of our friends (even the closest ones), and we never told my husband’s family.
I came out earlier this month on Facebook by posting an article one of my mentors wrote about me. The article was about how my courage to write about schizophrenia is an inspiration to my mentor. Of course, almost all of the people in my life were unaware that I was writing about schizophrenia, because they didn’t know about my diagnosis.
We received phone calls, text messages, letters, and Facebook messages in response to my coming out. On the surface, most people were supportive. One thing that began to happen immediately though, is people started to tell my husband, “Oh, I should have known.” Then they would mention some characteristic or situation I was involved in as an example of how I have acted mentally ill over the years. The things that they mentioned were not symptoms of my illness. They were situations when feelings got hurt, or when I got annoyed, or when I had an allergy attack. People have already started to forget that I am human, and have the same emotions and feelings as everyone else, and I tend to show those emotions and feelings freely and easily.
In other words, people have started to define me, and everything about me, through a new filter of the label of mentally ill. I am no longer a complex person full of complex experiences like you, I am someone who has paranoid schizophrenia, and I must be displaying symptoms of that constantly, as in all the time, as in everything I say and do. This is one of the reasons I was silent all of those years.
I do have many symptoms of paranoid schizophrenia, but most of my symptoms are not public, they happen in my mind, and generally speaking my husband is the only person I trust enough to share those symptoms with.
So here is the something to think about involving stigma; for over twenty years people worked with me, were friends with me, went to school with me, visited my home, attended family reunions with me, and none of them, not one of them, ever guessed I had paranoid schizophrenia. I am willing to bet that the majority of people believe that they would be able to tell someone who suffers from schizophrenia, especially if that person worked beside them every day for three years, or was a part of their family.
So often people with mental illnesses are hiding in plain sight; they have the same hopes and dreams as you. They have things that they love and cherish and things that they disagree with. They may love spring over fall. They may love the sunshine over the rain. They probably have many people who love them and others whom they love. In other words, they are made of the very same fabric as you.
It is true, they (me, us) have an illness, but they deserve the compassion, respect and support of anyone with an illness. Would you judge someone with cancer? Would you begin to connect all of their actions and all of their joys and sorrows to their illness? No, you would not. You would reach out your hand, send them flowers, or books, you might bake them a casserole. For those of us with a mental illness, you don’t have to make a special effort. I think most of us would be happy just to be allowed to dance along with the rest of the human race and not fear that we are being judged. Let us dance. Let us dance, beside you and with you. Let us be free to move with all of our heart without a label or without calling the movement of our bodies a symptom of an illness. Let it be called joy, and let us bask and live in the light of that joy. We are all around you, in fact, one of us probably even loves you.
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Rebecca Chamaa has been published in Transition, Structo, Serving House Journal, Pearl, The Reader, City Works, VoiceWalks, and other journals. She is writing a memoir about living with schizophrenia.
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