Yes I am seeing that too often we are concerned with only those issues that we see as directly or immediately impacting our lives or the lives of our loved ones. I'm thinking now of my being part of the Cause on Facebook that is called "Turn Facebook Purple For Epilepsy Awareness." Of course, turning a site a certain color is not going to provide any practical help for the problem of any social ill or need, epilepsy included. This issue here is awareness that is meant to spur people into action toward a cure for the forms of epilepsy that are severe and to get us to talk about a medical condition that, for anyone with this diagnosis, this medical condition carries an ongoing social stigma. This stigma is reality also for those whose seizures are totally controlled with medication. And no one wants to talk about it. Epilepsy is one of those things, like autism, mental illness, child sexual abuse, rape and other issues with codes of silence, that we "just don't speak about" or speak about only in hushed tones. This day, I have sent out 350 invitations to people in my network, hoping that many of them will join this epilepsy awareness cause and show their support. I have posted on my page about this cause over and over; I have also shared the Causes bulletin which is a brief note about why we need Facebook to be turned purple. So far, as I write this post, only two or three people have joined this cause out of literally hundreds of people, many whom I know have been online. The Causes note has not had one view, despite my shares of it. This is sad but it only illustrates the social stigma of epilepsy and that those of us who are concerned about it still have work to do.
Epilepsy affects about 3 million people in the US alone, which experts tells us is about the same incidence as breast cancer. And epilepsy can be as life-threatening, especially if it is undiagnosed and untreated. Breast cancer awareness, however, is far greater and with far more funding and resources, than epilepsy awareness. Breast cancer causes are always popular, breast cancer gets good media coverage, is the subject of high-profile fund-raising events and it seems that it is "cool" to support breast cancer. No one is self-conscious or ashamed to talk about it, either. This kind of awareness and resources are solid for many other diseases and conditions and few of them carry epilepsy's social stigma. But of the 3 million in the US who are diagnosed with epilepsy, according to health experts, many of these are children and teenagers. Epilepsy affects more people than many other medical conditions combined, health experts say. Epilepsy is often caused by head trauma, which is caused by accidents, concussions and therefore any one of us can find ourselves in a situation where we will end up diagnosed with this condition. What do I hope to see more of? I would like to see more advocates and good-hearted people, people who affirm that they care about issues that affect all of us, realize that epilepsy is also one of these important and relatable issues. If you hear much more from survivors of breast cancer, multiple sclerosis, lupus, and even heart disease, among other condition, guess what? It is because these other conditions do not have a code of silence that hush up their victims/survivors. It is NOT because they affect more people than epilepsy.
Just as stereotypes of many conditions abound that have some truth but not much, so the same holds true about epilepsy. I fear the stereotype of the typical epilepsy survivor that is floating around is that of a person who suffers seizures on a regular basis and that these seizure are the grand mal, full-bodied type. Not so. Epilepsy, like everything else, happens along a spectrum, from those whose seizures are fully controlled with medication and/or other therapy, to those whose seizures remain uncontrolled despite medication and/or other therapy. And seizures also happen along a spectrum, from "black outs" which mean lapses of consciousness that lasts for seconds, to grand mal, full-bodied seizures. Epilepsy and experiencing seizures only take up small parts of most people's lives, unless the person has severe, uncontrolled epilepsy. But there are enough of these cases that much more research needs to be done for better ways to contol such forms of epilepsy.
I have already shared my own epilepsy story in my first post about epilepsy last year but I will review it for those who have missed it. I know that many in the epilepsy may not embrace me as "one of their own" because, through I was diagnosed with epilepsy as a child, I have been seizure-free for the past 16 or so years. This is because of my long-term use of anti-convulsants; like many with epilepsy, seizure control comes at the price of often nasty side effects, everything from hair loss, swollen gums, cognitive losses to increased risks of osteoporosis and even liver failure. Side-effects of anti-convulsants often seem almost worse than seizures themselves! Yes, I'm aware of the ever-present possibility of a breakthrough seizure, which is possible for any one with epilepsy. When I was growing up and did experience seizues, they were the grand mal, full-bodied type without auras. When I experienced my last seizures, they were public. I experienced one of them on the school campus where I was attending college as an adults, have returned to school. On that particular day, I experienced another seizure when I was with my family and dining out at a local restaurant. The third seizure occurred when I was in my neurologist's office. Because the stigma of epilepsy was even worse in those days, no one talked about it. Therefore, I thought I was the only one with this medical condition. And because I was also diagnosed with Marfan's Syndrome, a condition that affects the connective tissues, eyes and heart, I have had, to this day, restrict my daily physical activities. This is not unique for those with potentially life-threatening medical conditions.
The social stigma of epilepsy may not be quite as bad as it was when I was growing up and certainly before that, but it remains. To illustrate this stigma, when I did return to the class where I had one of my last seizures, I was encouraged to drop the class. I found that I was ignored and not treated the same. I know why, that people no longer felt comfortable with me and what used to be an invisible condition had become very visible. As signs of this same stigma, each time I have volunteered to disclose my epilepsy to nonprofits, including in applications when asked about disabilities, my self-disclosure has backfired. Each time, I have been denied the opportunity to serve as a volunteer. Apparently, though I have accompanied my epilepsy self-disclosure with the assurance that my seizures were fully controlled, the nonprofits seemed to fear the condition and me and would have nothing to do with me again. These nonprofits would always provide other, nebulous reasons as to why my applications were refused, but these reasons came across to me as excuses for the real reason: prejudice of diability and difference, especially invisible ones. In my past, when a young man with uncontrolled seizures was talking with a friend, this friend, wanting to know how things were going with this young man, leaned forward and said, in a hushed tone, "your condition, your------------------,"
as though epilepsy were unspeakable and deeply shameful. And also, I recall a segment about a woman years ago, which was aired on the "Mystery Diagnosis" series. This woman experienced seizures that were uncontrolled but accompanied with auras so she could plan somewhat. She discussed the lengths she would go to to hide her seizures, including heading to bathroon stalls to cover them up, so her friends and associates would not know. Even today, people with epilepsy are generally discouraged from disclosing their epilepsy, especially on application unless directly asked about diabilities. And the very facts that I fear filling out another application where honsty will dictate an epilepsy self-disclosure and are finding it challenging to get strong, solid support for this "Turn Facebook Purple For Epilepsy Awareness" cause illustrate the continuing stigma of this medical condition. Yet in the Bible, when God visited the Earth in the Person of His Son Jesus, people with epilepsy would come to Him and be cured of their medical condition; he did not shrink from them.
Yes, there is no way to get past it or around it. I have epilepsy. I am also a daughter, a mother, a sister, a niece, a friend and a Christian, meaning that I have a relationship with God through Christ. Epilepsy is not my identity. It is just a tiny part of my life of which I am reminded each time I take my anti-convulsant and experience its side effects. Anyone else with epilepsy can say the same about themselves and their lives. They are first people and then they have epilepsy.
Why add your voice to this effort to spread epilepsy awareness or in other ways show your support? It is because you may know someone, even someone among your friends or associates or others in your life, who may have epilepsy but who may "stay in the closet" because of their fear of social stigma.
http://epilepsyfoundation.org/
This is the website for the trusted nonprofit that advocates for people with epilepsy in a variety of ways; you can educate yourself more there and see about how you can help.
http://www.talkaboutit.org/
This is a website for a nonprofit that is dedicated to eliminating the social stigma of epilepsy through awareness in many different forms and which has been founded by an actor.
http://talkaboutitorg.ning.com/
This is a social networking site for people with epilepsy and for anyone who wants to support them.
http://www.patientslikeme.com/
This is a social networking site and forum for people with medical conditions, including epilepsy.
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