Stigma and Epilepsy – Are There Solutions?

Stigma. It’s a word we know well. When seizures are well controlled, it’s something you never have to think about! You’re practically living a ‘normal’ life! The fear of having a seizure isn’t at the top of your mind. You’re not always worrying about disclosing to people, and thinking about whether you will be accepted or rejected for it. According to an article by M.Ahmad, (2011) Epilepsy stigma is considered to be one of the most important factors that have a negative effect on people effect on people with epilepsy. It can have an even more debilitating effect on the person with epilepsy than the seizures.

First of all; let’s start off with a definition of stigma. I use the word stigma all the time, but I had never really gotten a solid definition of what it means. According to Ahmad, “the concept of stigma was first introduced by Hoffman in 1963, who defined stigma as a loss of status and power resulting from separation of those stigmatization from the general population because of a characteristic that has been culturally defined as different and undesired.”

Weiss and Ramakrishna (2006) define Stigma as “a social process or related personal experience characterized by exclusions, rejection, blame, and devaluation”.

I know most of these words aren’t my own so far, but I don’t want to make up definitions of what stigma is. I also found an awesome article about stigma and epilepsy, and I’ll put the link at the bottom of the page. Anyway, whether you have epilepsy, some chronic illness, disease, or identify as something that isn’t seen as something that isn’t “mainstream” I’m sure you can relate to this post.

The author identifies 3 types of Stigma:

Perceived Stigma: which is the feeling of shame of being epileptic. This type of stigma is commonly associated with illness and medical conditions. The person with epilepsy thinks that they will automatically be devalued because of their epilepsy, and will adopt social withdrawal strategies, which will reduce their quality of life.

Enacted Stigma: Is actual episodes of stigma where it is believed that epilepsy is a product of greater sin and present danger to non-epileptics.

Courtesy Stigma: This is where the whole family is involved. A family member, such as a child, may be kept at home, and the diagnosis is kept secret from the public, in fear of seen as being “different” or putting shame on the family.

Although Stigma greatly effects many people with epilepsy, all is not lost! Here are some of the many things we can do to help improve the situation of stigma in People With Epilepsy :

Early Treatment of People with Epilepsy
There was a lot to write, and it wasn’t my passion, so I decided to focus on the other two;)

Education

Education is the most important tool for fighting Epilepsy Stigma. In order to improve society’s attitudes towards epilepsy, it is essential to get the correct information about epilepsy. Until people are misinformed with the wrong information, stigma will continue to be an issue. Ways to educate people about Epilepsy are through media venues, lectures in schools, churches, in schools, mosques, and social gatherings.

Self Advocacy

I believe this step of reducing stigma is essential. People are hearing about epilepsy from the Horse’s mouth, so to speak. You are telling people what it’s like to have epilepsy from a first hand experience, and you are the expert of your own seizures and what you need. This thought is kind of scary. My dad told me this once. I’m the expert of my own seizures. Not in the sense of in a doctor kind of way, but I’m the only one who knows how they feel, and I can advocate exactly what I need. Advocacy can be scary and difficult. I am lucky, I have my parents, doctors, and friends who help me advocate. But I am trying to be a better advocate. According to this article, the role of physicians, health proffessionals, and epilepsy organizations should help people with epilepsy to be self self-advocate so as to gain self-esteem. Couldn’t agree with this more.

On a side note: I’m doing well! I found out I have low iron levels so that’s why I was so tired! I’m now taking an over the counter Iron pill and it’s amazing how quickly it works! I don’t feel like I’m carrying around two bowling balls behind my eyes every day! Hurray! It’s also sunny and I think Spring is coming! 🙂

This is the article that I quoted:

http://docsdrive.com/pdfs/academicjournals/crn/0000/21921-21921.pdf

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9 thoughts on “Stigma and Epilepsy – Are There Solutions?”

  1. yes very good post, really important subject. Personlly my worst experience of stigma was working on a project that was supposted to be identifying stigma and discrimination in society. The stigma I experienced in relation to epilepsy was outragous, it took 5 years for the employer to give me a risk assessment, or an occupational health assessment. I had to put in a complaint in order to get one because my employer wanted to reduce my hours over making these legal employment adjustments. One person actually said that I was too much of a risk to be in an OFFICE and that i was at risk of being run over by a CHAIR if i had to lye down on the floor during/ after a seizure. Perception is a very important part of stigma, these people were absoulutely adament that they were in the right, that they knew best and that I was a risk. it shows that legistlation is really important to reduce stigma from the uneducated and ignorant, but most commonly fear driven behaviour in society in order to protect the vulnerable.

    1. Holy moly it took 5 YEARS?! Geez that’s awful! I’m sorry you had to go through that! Also, I can’t believe that you were told that you would be at risk working at a desk job type position. (just in that you would be in a chair at a desk). Somewhere along the line, it was suggested to me that if my seizures were not super well controlled that working at a desk would be the best type of job for me! Hopefully things are getting better for you, I can’t even imagine what that would be like.

      And yes! YAY for the iron levels! Finally something is making sense! 😀

      1. yes I really hope that it will get better soon, hopefully I won’t have to work for them for much longer, they are trying to make me redundant.i can honestly say that they are the most unpleasant employer I have ever had, and that yes a desk job is actually pretty ideal, along with working with other people. I could write a book about it has been so bad. Keep pumping the iron levels ! 🙂

  2. This is so thoughtful and it is timely for me to read. I will (hopefully) be going back to work soon after surgery. The neuropsych is testing me on Tues! I am so comforted hearing about the people around you. This experience, especially the surgery (which has not worked) have shown me how deep all the compassion and love are around this little one. I have never been so grateful for this beautiful world.

    And I’m gonna get back to taking my iron, too!

    Thank you!

    1. I hope you are able to get back to work soon! Your surgery must have been quite the experience…how long does it take for you to know whether it’s working? (I haven’t had surgery, so I don’t know much about it). It will all come together in the end, it always does;)

  3. I Have been suffering from the problem of epilepsy from when a was a child,until i met a great Dr Ebato who helped me out i got is contact from the testimony of others, now am fully well.all thanks to him.any one with such problem can also contact him on +2349038504409 or ebato1232@gmail.com

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