This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along!
As people with epilepsy we experience stigma as part of our everyday lives. The stigma associated with epilepsy is a well-researched and firmly established fact. However, stigma does not announce itself. Although the best response to stigma might be education, I sometimes wonder what the best means for education really is. We hear a lot about telling our stories. Storytelling is often done with words, but are there other ways to tell a story?
Elaine asks: Can words alone penetrate the silence that is stigma?
When vulnerability turns to feelings of suicide
Being stigmatized increases vulnerability to feelings of suicide. This is another well researched and firmly established fact. I am vulnerable to intermittent feelings of despair and suicide because I face the religious stigma that sees epilepsy as caused by sin. I was raised in a holiness church where disease is frequently attributed to sin. Prayers for repentance and a return to finding “the center of God’s will” are combined equally with prayers for healing from illness. The unspoken assumption in many religious belief systems is that freedom from sin and a life at the center of God’s will leads to a life of health and blessing. In holiness sermons, periods of hospitalization are often described as a time of soul searching where healing comes after the sick person identifies the sin or shortcoming that caused the illness and makes a life change that is a return to the center of God’s will and freedom from sin.
Protecting yourself against stigma
The devaluing of people with epilepsy by religious belief systems and by the people who follow those religious belief systems has been going on for centuries. The fact is, I feel at a complete loss to find words to combat long established religious stigma. First and foremost, I no longer go to churches or form close relationships with people, including members of my family, who use religion, even well-meaning offers for healing prayer, to stigmatize me. I have learned that no matter how much I am devalued by others, the worst is for me to devalue myself. All people with epilepsy are at risk for self-devaluing. The unspoken devaluing of people with epilepsy by others is likely to influence me whether I realize it or not.
My living body story will go on even in the face of stigma unless I silence my body story by self-devaluation suicide. I’ve written this poem to remind myself that the devaluation of people with epilepsy stops with me because I refuse to devalue myself.
Why I will not commit suicide.
I will not commit suicide
Because that would be the easy way out
Not for me
My suicide will be the easy way out for you
It is easy for you to decide that my voice does not count.
Is one killing enough?
Will I, with my own hand, make it two?
Will I dispose of the body, too?
Why I will not commit suicide.
by Elaine M. Reeves
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