It’s the current trend as people are sitting at home on their phones, and that’s the popular app TikTok. It has well-known in our community for the wrong reasons. The majority of you have now seen the “seizure challenge” takeoff. Back when I first saw it, I wasn’t going to talk about it, but after being tagged numerous times, I’ve decided to speak my opinions. Please bear with me as it may be different from others due to my work background.
I was deeply saddened when I first saw the challenge take place. It absolutely does not show what seizures are really like and what the true after effects are. It kills me that people are willing to portray something like that when they don’t know how it actually feels to go through a seizure. It’s easy to “fake” one for the camera, but it sucks when you fall to the ground and spend hours trying to recoup after a real one. My heart goes out to each and every one of you in the epilepsy community who have seen those videos. I absolutely love the petitions, posts, and even news stories about this on social media. It shows the power of our community.
Now, with that said, my marketing side kicks in too. While these videos are disturbing, they are unfortunately not illegal. I understand that’s something you probably didn’t want to hear, but in reality, it’s true. In today’s society, people will do anything for attention, and this is a great example. It’s sad that it targets our community, but really the only thing we can do is ignore it. We have to realize that we are giving them exactly what they want, and the odds of us changing a company’s model is low.
Seeing videos that don’t reflect seizures the right way hurt me just as much as they do to you. As you can tell, our community is doing so much to try and change this trend. However, the society we live in today makes it harder for us to do that. I know this is a different response, but I hope it gives a sense of truth.