Lupus. Cancer. Multiple Sclerosis. Heart disease. Hyperglycemia. Hypoglycemia. Diabetes. Migraine Headaches. We talk openly about these conditions (and many others) and their symptoms and we should. And yet when it comes to epilepsy, this is different. How easy is it to use the words "epilepsy" and seizures"? But this condition affects millions of people and many families. And yet there is a definite stigma attached to it, so that many people with epilepsy will not disclose their condition when applying for higher education or jobs or when entering relationships especially with the opposite sex. The stigma actually goes back to the days of the Bible when the concept of neurological conditions like epilepsy did not exist; seizures were considered demon possession (yes, I do believe in actual demon possession with signs that mimic seizures but that is a separate topic). Though we know better now, the stigma still exists; institututionalized and social stigma continue. This is because when people experience seizures, especially the grand mal kind, their bodies are out of control, their minds in states of altered consciousness.
Yes, many seizures are not due to epilepsy. Take febrile seizures, for example, where children especially, experience these because their immature systems can't handle the infections that their bodies use fevers to fight. My daughter experienced these until the age of six which is said to be the normal age for outgrowing these sort of seizures.
Epilepsy exists on a spectrum, from those whose seizures occur daily to those whose seizures occur a few times a month or a year to those with full control. And seizures also are on a spectrum, from minor seizures to complex-partial or temporal lobe seizure to grand mal seizures. Epilepsy can be acquired at any age and can happen to anyone, especially if experiencing traumatic brain injury or an automobile accident or another such misfortune. There are a number of treatments to manage epilepsy especially medications. And epilepsy is more likely to occur in those with other neurological conditions, like autism or cerebral palsy, for example. There are many different types of seizures, from fleeting episodes of unconsciousness that last for seconds ("blackouts) to episodes of total, full-body unconsciousness as in grand mal seizues.
As a child, I was diagnosed with epilepsy. The seizures I experienced, over the years, have been sporadic for the most part. They are the grand mal kind. Thank God, I have been seizure-free for about 15 or 16 years. However, I have paid a high price to remain seizure-free. And I know many others with seizues have testified to suffering side effects. In my case, it was my long-term use of anti-convulsants that, in my opinion, caused me to deal with losses of both long term and especially short-term memory. I also have experienced slowed mental processing and reaction time. Because of these things I was strongly discouraged from getting a Driver's License. These kind of side effects have been more disabling to me than the seizure themselves, traumatic as they have been at the time. In the case of others, many also testify to experiencing side effects from cognitive losses to hair falling out to swollen gums. There are other side effects which I won't go into for the sake of space and length.
As for social stigma, this like the side effects of medication, has affected me more than than seizures themselves. Once, I applied for a volunteer position for a local pregnancy resource center for those dealing with crisis pregnancies. Sometime after my interview with the Director, I disclosed to her "And there is another thing; I have epilepsy." "I'm glad you told me that," she said. What? All I know was that a month or so later, I was dismissed as a volunteer. I noticed that when I was told about this, a small tape recorder was used without my consent. "We do not feel you are a good fit for working here and because of your living circumstances," was all I was told. Yet I wonder if my self-disclosure of epilepsy had anything to do with it.
Another example of stigma is when I returned to college as an adult; in the course of time I took a class in German. One day, in that class, I experienced a seizure, one of three I experienced that day. Afterward, I was encourages to drop this class. And, for the remainder of the class, I noticed that the manner of my classmates changes toward me (I never felt liked by that class instructor in the first place but this is beside the point) changes and they would ignore me forever thereafter. My neurologist, whom I like very much, has told me once, "I tell all my patients who have seizures not to have children." Yes, I know that most members of the epilepsy would look on me with envy because I have full seizure control, as of 16 years, with medication. I have never felt that I really "belonged" there either. Yet, I too have, and continue, to deal with the stigma and the side effects of long-term use of anti-epilepsy medications, which have interfered with my memory and moods and reaction time to my fertility. I'm thankful that my medication works for seizure control but I dislike its side effects which interfere somwhat with functioning and this is common in those who use these medications because of the way they work to stop seizures.
Many studies show that more people, in the US alone, die from epilepsy than from breast cancer. And yet there is far more breast cancer awareness and far more breast cancer resources. And when people reveal themselves to be breast cancer survivors, they tend to be treated with honor, deserved as this is! Years ago, I was in a setting where a person revealed, "I am a breast cancer survivor." Upon saying this, the speaker overwhelmed this person with words of support, tenderness and honor, saying something like, "we are so blessed and inspired that you are among us and that you have survived this killer! You are a walking miracle! We are all in this room honored that you are here sitting among us!" However, if this person had said that she had survived seizures cause by epilepsy, I daresay that she would have gotten this sort of response. I fear that the speaker, if this person is like many people, would have not known what to do with such a self-disclosure. It is because of this stigma of epilepsy that people do not, as a rule, disclose epilepsy in themselves or in loved ones. This stigma is lessening but it is still there. One HUGE reason this stigma must end is because research is still needed for those whose seizures cannot be controlled with medication, and money is needed to do this research.
Stigma undermines awareness and fundraising.
Chances are, if you don't know anyone with epilepsy, it may be that, because of its stigma, they have not disclosed it to you. This month, therefore, has been designated National Epilepsy Awareness Month with the focus to undo its stigma through education and awareness. There are some excellent links below where you can learn much more, because epilepsy, like cancer or heart disease, can happen to any of us or a loved one.
Thank God that a nonprofit has been set up and have a social networking site that exists just to undo the stigma of epilepsy through encouraging people with epilepsy and those with loved ones with this neurological condition, through talking about it. Thus, it is called the Talk About It! Foundation. The only way to get rid of stigma is to talk about it!
http://epilepsyfoundation.org/ This is the National Epilepsy Foundation website.
http://talkaboutit.org.ning.com/ This is the blogspot for The Talk About It Foundation, for epilepsy awareness.
https://www.facebook.com/#!/pages/talkaboutitfoundation/ This is the Facebook page for the Talk About It Foundation, for epilepsy awareness.
Showing posts with label Seizures. Show all posts
Showing posts with label Seizures. Show all posts
Friday, November 9, 2012
Saturday, February 4, 2012
Why We Need To Talk About Epilepsy
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.
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.
Monday, November 7, 2011
November is National Epilepsy Awareness Month
Lupus. Cancer. Multiple Sclerosis. Heart disease. Hyperglycemia. Hypoglycemia. Diabetes. Migraine Headaches. We talk openly about these conditions (and many others) and their symptoms and we should. And yet when it comes to epilepsy, this is different. How easy is it to use the words "epilepsy" and seizures"? But this condition affects millions of people and many families. And yet there is a definite stigma attached to it, so that many people with epilepsy will not disclose their condition when applying for higher education or jobs or when entering relationships especially with the opposite sex. The stigma actually goes back to the days of the Bible when the concept of neurological conditions like epilepsy did not exist; seizures were considered demon possession (yes, I do believe in actual demon possession with signs that mimick seizures but that is a separate topic). Though we know better now, the stigma still exists; institututionalized and social stigma continue. This is because when people experience seizures, especially the grand mal kind, their bodies are out of control, their minds in states of altered consciousness.
Yes, many seizures are not due to epilepsy. Take febrile seizures, for example, where children especially, experience these because their immature systems can't handle the infections that their bodies use fevers to fight. My daughter experienced these until the age of six which is said to be the normal age for outgrowing these sort of seizures.
Epilepsy exists on a spectrum, from those whose seizures occur daily to those whose seizures occur a few times a month or a year to those with full control. And seizures also are on a spectrum, from minor seizures to complex-partial or temporal lobe seizure to grand mal seizures. Epilepsy can be acquired at any age and can happen to anyone, especially if experiencing traumatic brain injury or an automobile accident or another such misfortune. There are a number of treatments to manage epilepsy especially medications.
As a child, I was diagnosed with epilepsy. The seizures I experienced, over the years, have been sporadic for the most part. They are the grand mal kind. Thank God, I have been seizure-free for about 15 or 16 years. However, I have paid a high price to remain seizure-free. And I know many others with seizues have testified to suffering side effects. In my case, it was my long-term use of anti-convulsants that, in my opinion, caused me to deal with losses of both long term and especially short-term memory. I also have experienced slowed mental processing and reaction time. Because of these things I was strongly discouraged from getting a Driver's License. These kind of side effects have been more disabling to me than the seizure themselves, traumatic as they have been at the time. In the case of others, many also testify to experiencing side effects from cognitive losses to hair falling out to swollen gums. There are other side effects which I won't go into for the sake of space and length.
As for social stigma, this like the side effects of medication, has affected me more than than seizures themselves. Once, I applied for a volunteer position for a local pregnancy resource center for those dealing with crisis pregnancies. Sometime after my interview with the Director, I disclosed to her "And there is another thing; I have epilepsy." "I'm glad you told me that," she said. What? All I know was that a month or so later, I was dismissed as a volunteer. I noticed that when I was told about this, a small tape recorder was used without my consent. "We do not feel you are a good fit for working here and because of your living circumstances," was all I was told. Yet I wonder if my self-disclosure of epilepsy had anything to do with it.
Another example of stigma is when I returned to college as an adult; in the course of time I took a class in German. One day, in that class, I experienced a seizure, one of three I experienced that day. Afterward, I was encourages to drop this class. And, for the remainder of the class, I noticed that the manner of my classmates changes toward me (I never felt liked by that class instructor in the first place but this is beside the point) changes and they would ignore me forever thereafter. My neurologist, whom I like very much, has told me once, "I tell all my patients who have seizures not to have children."
Chances are, if you don't know anyone with epilepsy, it may be that, because of its stigma, they have not disclosed it to you. This month, therefore, has been designated National Epilepsy Awareness Month with the focus to undo its stigma through education and awareness. There are some excellent links below where you can learn much more, because epilepsy, like cancer or heart disease, can happen to any of us or a loved one.
http://epilepsyfoundation.org/ This is the National Epilepsy Foundation website.
http://talkaboutit.org.ning.com/ This is the blogspot for The Talk About It Foundation, for epilepsy awareness.
https://www.facebook.com/#!/pages/talkaboutitfoundation/ This is the Facebook page for the Talk About It Foundation, for epilepsy awareness.
Yes, many seizures are not due to epilepsy. Take febrile seizures, for example, where children especially, experience these because their immature systems can't handle the infections that their bodies use fevers to fight. My daughter experienced these until the age of six which is said to be the normal age for outgrowing these sort of seizures.
Epilepsy exists on a spectrum, from those whose seizures occur daily to those whose seizures occur a few times a month or a year to those with full control. And seizures also are on a spectrum, from minor seizures to complex-partial or temporal lobe seizure to grand mal seizures. Epilepsy can be acquired at any age and can happen to anyone, especially if experiencing traumatic brain injury or an automobile accident or another such misfortune. There are a number of treatments to manage epilepsy especially medications.
As a child, I was diagnosed with epilepsy. The seizures I experienced, over the years, have been sporadic for the most part. They are the grand mal kind. Thank God, I have been seizure-free for about 15 or 16 years. However, I have paid a high price to remain seizure-free. And I know many others with seizues have testified to suffering side effects. In my case, it was my long-term use of anti-convulsants that, in my opinion, caused me to deal with losses of both long term and especially short-term memory. I also have experienced slowed mental processing and reaction time. Because of these things I was strongly discouraged from getting a Driver's License. These kind of side effects have been more disabling to me than the seizure themselves, traumatic as they have been at the time. In the case of others, many also testify to experiencing side effects from cognitive losses to hair falling out to swollen gums. There are other side effects which I won't go into for the sake of space and length.
As for social stigma, this like the side effects of medication, has affected me more than than seizures themselves. Once, I applied for a volunteer position for a local pregnancy resource center for those dealing with crisis pregnancies. Sometime after my interview with the Director, I disclosed to her "And there is another thing; I have epilepsy." "I'm glad you told me that," she said. What? All I know was that a month or so later, I was dismissed as a volunteer. I noticed that when I was told about this, a small tape recorder was used without my consent. "We do not feel you are a good fit for working here and because of your living circumstances," was all I was told. Yet I wonder if my self-disclosure of epilepsy had anything to do with it.
Another example of stigma is when I returned to college as an adult; in the course of time I took a class in German. One day, in that class, I experienced a seizure, one of three I experienced that day. Afterward, I was encourages to drop this class. And, for the remainder of the class, I noticed that the manner of my classmates changes toward me (I never felt liked by that class instructor in the first place but this is beside the point) changes and they would ignore me forever thereafter. My neurologist, whom I like very much, has told me once, "I tell all my patients who have seizures not to have children."
Chances are, if you don't know anyone with epilepsy, it may be that, because of its stigma, they have not disclosed it to you. This month, therefore, has been designated National Epilepsy Awareness Month with the focus to undo its stigma through education and awareness. There are some excellent links below where you can learn much more, because epilepsy, like cancer or heart disease, can happen to any of us or a loved one.
http://epilepsyfoundation.org/ This is the National Epilepsy Foundation website.
http://talkaboutit.org.ning.com/ This is the blogspot for The Talk About It Foundation, for epilepsy awareness.
https://www.facebook.com/#!/pages/talkaboutitfoundation/ This is the Facebook page for the Talk About It Foundation, for epilepsy awareness.
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