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.
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.
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 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.