One of my very first memories of stigma occurred in 7th grade. I remember this day so clearly, which is surprising given the memory deficits my brain holds. Every school quarter, each student had to give a research-based presentation in our science class. One quarter, I was given the green light to speak about Epilepsy. This was a big deal; researching and presenting a topic that none of my classmates had done and one that was so personal left me feeling excited and nervous. I was extremely worried, though, that someone would ask if I had it.
Let me note very quickly: it is, to date, one of the best presentations I have ever done. Aside from the exciting animations and magical clip art, it was a blast to research and included really relevant information for both me and my classmates. This project convinced me that grades 7/8 are good times to talk about Epilepsy with students. But then came the end and the two words that mark the end of every middle school presentation: any questions? My mom came to watch and support me, for which I am still extremely grateful. She answered a few questions at the end that I was unsure of and smiled in approval the whole time.
The Truth Comes Out
Of course there were questions. “Did Julius Caesar really have Epilepsy” was a good one. (Fun fact: yes, he did). I’m sure there were a few others I don’t remember. One big one sticks out. The dreaded question. One I had rehearsed answering with my family but had mixed feelings about answering when actually presented with it. It was asked by a boy sitting in the middle of the classroom. He asked: Do you know anyone who has Epilepsy? I debated answering this in two ways: I could simply say that yes, I did in fact know someone with it or I could reveal my diagnosis to my classmates. Knowing what would ultimately make me stronger, I chose the latter option. I told my classmates about my Epilepsy. Shockingly, my worst nightmares about the moments after that answer didn’t come true. No one dropped their jaws to the floor. No one screamed with horror. My classmates actually became more interested, asking more questions about seizures and my own experiences. It was incredibly empowering.
I hope this story makes you feel warm and fuzzy. It should; my classmates were so kind and caring. But, what I didn’t reveal in this retelling is the immediate stigma that my classmates applied when I revealed my diagnosis. I had just given a presentation on Epilepsy including information on what it is, how it may affect individuals, that all people are not impacted in the same way, etc. Yet, the moment I said “yes”, that knowledge went out the window. One question I remember getting is “you have seizures…so can you not swim?” At the time, I answered it and reiterated that not everyone is affected in the same way. Looking back, I see how stigmatized that question is. There is a stigma that individuals with epilepsy cannot do a number of different activities, one of them being swimming. The student who asked was probably wondering if I fit that mold. She should have known, from many instances, that swimming was an activity I participated in (with proper supervision). We both had to jump off of diving blocks in the deep end in elementary school and we both attended pool parties with friends. Not to mention I had just presented on seizures. But as soon as she saw Epilepsy in the flesh, it meant that all of her stigma applied. What mattered was that the perception of me was now altered and the facts needed separated from the lies.
I’d love to say that through that presentation, stigma was eliminated in my peers and I lived a smooth life afterwards. I can’t say that though; I still encountered stigma among peers and even some teachers. Stigma isn’t that easy to get rid of. One lesson isn’t always enough to eliminate false perceptions that are embedded in a person’s mind. It’s a start, but it isn’t the end. This is why it’s important for us to keep educating others. Continue to spread accurate information-both good and bad-about Epilepsy, seizures, and what it means for anyone impacted by it. Make it fun, make it repetitive, make it continuous; no matter how you do it, make it known.
What’s your stigma experience?
I’d love to hear how you have dealt with stigma; please share your experiences in the comments 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.
What a great blog! It was so good to read that your classmates were kind and caring and that you felt empowered!! I have a friend from North East (now moved) whose daughter also had epilepsy, and had so many seizures (multiple, daily) that she finally had surgery on her brain – and has been seizure free for a couple years now. She’s doing well. I hope research keeps uncovering new treatments and a cure! Thanks for sharing your story. You are an inspiration!
Thank you, MaryAnn! I’m so glad to hear surgery worked for her. I’m sure it has changed her life! Hopefully further research can make that possible for more of us!
Congrats,Leila, on an eye-opening article. Personally, we took a differnt approach when it came to informing classmates about epilipsy. Starting in kinder, my daughter began making yearly presentations to her classmates, sharing age-appropriate information about epilepsy and how they might be helpful if they happen to notice that she was having a seizure. I truly believe that this removed the stigma; from an early age, her friends and classmates accepted Chelsea for who she was, epilepsy and all. When kids learn about differences as young ones, they have the advantage of fewer preconceived ideas. In addition, when something seemed a little “odd,” they had already been informed about what they might expect and, more importantly, how they might help their friend. With that said, the journey is different for everyone, so families need to do what feels right and comfortable for them.
Hi Becky! Thanks for commenting! I think starting the discussion from a young age is a great idea. If the kids learn the facts early on, it leaves less room for stigma. Plus, as you said, had a better ability to help their friend. What a great environment to grow up in!