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Epilepsy Stigma: Why Leila is tackling this obstacle in her own way

Leila's Ideas: Epilepsy Stigma
Walking across the stage at high school graduation in 2008.

What is Stigma?

Stigma, as defined by Merriam-Webster, is “a set of negative and often unfair beliefs that a society or group of people have about something.”  This is a widely accepted definition.  But, in the full definition, stigma can also be defined as “an identifying mark” or “a mark of shame.”

In the medical community, it is more commonly used to mean “an identifying mark,” the mark of a disorder or disease.  An example might be the red spots usually seen with chicken pox or the white spots seen in the throat with strep.

Invisible Illness

Epilepsy is sometimes termed an “invisible illness,” one that isn’t easily recognizable just by looking at a person.  Not characterized by outward, visible marks, doctors use EEGs, MRIs, and other tests to look at our body and brain to see the marks that seizures leave.

But wait…aren’t seizures a pretty identifiable mark of Epilepsy?  Absolutely.  A seizure is a powerful and sometimes scary image that can signal a person has Epilepsy.  The interesting part of that is, that seizures are one of the only ways to outwardly identify a person has Epilepsy.

And if someone doesn’t learn additional facts about it, a seizure might be the only information he/she has about Epilepsy or those who have it. That’s where stigma steps in.  A person might use what he/she knows about seizures, or those who have seizures, to make assumptions (big and small) about you, me, or anyone else they see have a seizure.

Reasons for Stigma

Stigma is a societal problem.  A stigma is a widely accepted opinion or even definition of something.  It’s used when individuals don’t know the true facts, when the knowledge base isn’t wide enough to understand the concept at hand.  With a disorder such as Epilepsy, where there is information still unknown to professionals, it makes sense that falsehoods would become the norm in society at large.

People seek to fill the gaps in their knowledge with whatever they can find.  Sometimes, people don’t know they are filling their mind with false information.  It’s simply the information that was given to them.

For example, I have a friend who told me that one stigma she used to hold was that bright lights always caused seizures.  She didn’t know that it wasn’t true; her experiences led her to that conclusion.  She used the information she had to make an assumption to understand the world around her.  Then, when we met each other and I revealed I had a diagnosis, she learned new information: bright lights do not always trigger seizures.  Sometimes they can, but it depends on each person’s response to the lights.  Another common stigma I’ve encountered is that grand mal seizures are the only kind.  To someone who has only ever seen these types of seizures, that seems true.  But with additional information, we learn that there are over 40 types of seizures.

A Positive Future

So, what do we do with this information?  We know what stigma is and we know a few of the reasons behind epilepsy stigma.  Now what? Well, it’s time for education.

When I talked with my friend about my own triggers, she learned that bright lights aren’t a trigger for all who have seizures; personally, lack of sleep and missing medications are two of my own.  When I speak with anyone, I try to teach that sometimes seizures are less noticeable than grand mal events.  I give them signs of what to look for and an understanding of what causes seizures.

Again, epilepsy stigma is a societal problem.  Addressing people one-by-one is helpful, and I hope they teach others what they have just learned. Ideally, the message of hope and acceptance will get louder with time.

Misunderstood

We, as the people who have experience with Epilepsy, have a job to reach others and get our message out in the open.  This means talking with one another about experiences, achievements and obstacles.  This can be difficult.  It’s hard to open up and be very real about something as misunderstood as Epilepsy.

I’ve had many hurtful labels put on me and I’m certain I’m not alone.  Thinking of those nasty remarks makes me want to close up shop; why would I share my story?  The rude people labeling me aren’t worthy of hearing my struggles and triumphs, my highs and lows.  At these times, I remind myself: these people don’t have the same understanding of seizures that I do.

I need to open up to them because they have no other way of understanding what Epilepsy is or does.  Perhaps they have never encountered someone with Epilepsy before; why should I expect them to have full knowledge of it?  Of course they believe the myths surrounding epilepsy; these are widely believed ideas!

Dealing with Stigma

Just because a person doesn’t understand me yet doesn’t mean I can’t help them.  It doesn’t mean that I should be rude and unwilling to understand their beliefs either.  Part of having Epilepsy is dealing with stigma.  Part of dealing with stigma is being kind to those who may not be kind to you and putting effort into understanding their perspective before they understand yours.

How are you tackling epilepsy stigma? What is your experience? Leave a comment below.

 

Leila Shields
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Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.

  1. ammara
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    hello
    i liked the post. its good to know there are people out there working on this aspect of epilepsy as well.
    as for me i am a 27 year old, epileptic for the past 18 years now. i have JME with all three types of seizures, not responding much to meds, despite being on polytherapy…. and i am a docter. well as for the stigma…. u would be surprised to hear even the docs are under it… though u would expect them to be more of caregivers, but the misconception of the disease remains here too…. once i even encountered quite a senior doc who prescribed me anti depressants since i complained of the side effects of the anti epileptic med, which he wasn’t ready to accept, as according t him the side effects usually occurred at a much higher therapeutic dose. i later showed to another doc who suggested to get the levels checked just incase, and they were way beyond the toxic range. i wonder why dont the docs for once just start listening to the patients hx in detail first before they label it….. as for the label … i went under the diagnosis of grand mal for 16 years due to repeated uncontrolled seizures. Till i became doctor enough to diagnose the other types of seizures happening to me and then told the physician the relevant history myself of the other seizures. only then they gave this diagnosis. simple point if the docs and neurologists do take a detailed history and cross questioning session with the patient in the beginning , they would perhaps reach the correct diagnosis sooner.

    and another thing despite the knowledge given in textbooks and their first hand experience with a seizure, its difficult for most of the docs to recognize the aura, and help the patient while he can be helped. they just fail to identify it. i remember after my second year at medical college, i worked as a volunteer in a hosp with a consultant. we had a patient in the out patient department who came with some other complain and had a history of epilepsy. by the time the doc advised him to go, she was already showing symptoms of an incoming seizure. i asked the doc, not to let the patient go instead make her lie down as she wasnt well. the doc was surprised and reluctant till i told him to look at the eyes for the increased nystagmus as well as the gait, facial expression and disorientation. he agreed but reluctantly. ten min later she had a seizure. my point attention should be paid by docs in identifying the aural symptoms in patients as they might as well prevent the patient from harm…. instead of attending them after a seizure when the associated trauma has occurred.
    as for the society stigma… well its the same, peolpe deal the patient as more of a theater than anything… not to mention the snide comments…. so its best to ignore and show them what u have got instead of talking otherwise… it does help a lot in changing how people see you.
    i once got seizure on a road while i was alone and some1 kept me in their house and only hours later when some1 of the neighborhood recognized me and told em where i lived, they brought me home. i woke up to see a huge crowd of all sorts of ppl around me. not actually helping but as a spectator…. i decided it was best to sleep instead to answer all the quesions and listen to their comments ;P….

    i had repeated seizures in school so my entire class knew of my condition, and as a general perspective looked down upon me as some1 who is disabled…. till i became a docter…. and now they re just surprised to learn i came this far…. no more of the disabled child they considered me as.

    i was kicked out by one of the hospitals during my house job/internship as they considered me unfit for the job once they got to know of my condition…. But Allah is great, he closes one door and opens another. i got house job in another hospital and the initial one was in gyne( for those of u who are clueless, its considered the most hectic and demanding house job) and i am delightful to say i succeeded to be remembered in the good books of all the docs there as well…..

    due to repeatedly getting ill, while there were those who tried to pull my leg, there were those who supported me in those hard times, realizing the struggle and appreciating my hardwork and sincerity in work . …. i eventually did make extremely loyal friends around me…. who judge me as a person now and not a patient.

    there are many ppl around me who know i have epilepsy due to my repeated seizures, but as long as u are mature enough and ready to ignore and move on with your life, so do they…. they do take some time…. but given sum patience they do appreciate you for the real person you are….. so dont let pplz views define you… you define yourself.