Epilepsy and Social Media
Lately, I’ve noticed that not many people in my age group are active or vocal about that annoying thing inside our brain, epilepsy, on social media. Instagram, Facebook, and Twitter are filled with teenagers and young adults, and I often wonder: Where are the teens with epilepsy? It affects 1 in 100 teenagers, and if there are so many kids with the same disorder, why aren't they talking about it? These are my thoughts about the topic.
Here is my first theory
Perhaps some teens don't use social media. Yes, you read that correctly- teenagers with epilepsy aren't on major social media platforms. For a short period, I wasn't either. I was stuck in a place online where I didn't know if I should post about my epilepsy, or post a cute, filtered photo of myself to fit in with my peers on Instagram. Maybe for some, staying off social media is a good idea because they won't have to be in the sticky place I used to be in.
Here's my second, more realistic theory
Epileptic teens and young adults are on social media, but they don't talk about it. Tons of people don't speak about it because it doesn't fit their aesthetic and don't want to lose followers, or possibly because they don't want people to know that they have epilepsy. I used to stay in that epileptic closet too, and it wasn't the best. I was wary of telling my friends that I had epilepsy because I was scared that they would look at me differently. Some did, and some didn't, but that is how life works: by trial and error.
Here's another
People with epilepsy have separate accounts- one to interact with their friends from school, and another to post about their epilepsy. This one is not exactly a theory because it's the truth. I saw this trend while I was doing my research, which happened to be scrolling through thousands of online profiles under various hashtags relating to epilepsy. To me, the pattern of creating different accounts seems as if people are trying to detach themselves from their disorder like they are two different people. To say that I dislike this trend would make me hypocritical because I thought about creating another account for this blog. However, I do understand this trend and why people do it: they either tried to advocate on their main account and didn't like the results, or they aren't ready to unleash their inner advocate to the world. Either way, two accounts are better than none.
Now, I am not asking every teenager and young adult to be full-fledged epilepsy advocates (if you want to, I'm not complaining), but I want all of those young, bright people to accept their counterpart, epilepsy. We are paving the way for young children with epilepsy, and we can't do that unless we accept ourselves for who we are before teaching them how to do that.
Find me on twitter @kaileyh175
-That Girl with Epilepsy