Oh hey friends! So I am formally introducing a new weekly addition to my blog: Epilepsy 101 every Wednesday. It is where I will answer common questions that I get about having Epilepsy, so hopefully I can answer many questions! If you have any questions that you want answered, simply post it in the comment section. Also, I realize that this pic doesn’t 100% go with this theme, but who cares!
Okay, so this week’s question! What Do People Say When I Tell Them I Have Epilepsy? Here goes:
Over the past couple of years I have had to ‘come out’ more and more and tell people that I have Epilepsy. When I was a kid I never had to tell anyone. I wasn’t ashamed of it, per say but it really wasn’t an issue as it was well controlled. Coming out is sometimes hard. You just want to have a normal conversation, and you don’t want to interrupt it by mentioning this neurological disorder that is actually a pretty big deal in your life. When I tell people I usually say “Erm, by the way I have Epilepsy. Do you know what that is?” People generally understand that people have seizures with this chronic condition, but I generally need to clear up what my seizures do (or don’t!) look like. I have to explain that I don’t convulse (as people with Tonic Clonic seizures do), but sometimes I can fall unexpectedly due to muscle rigidity. People are generally concerned about what to do in the event of a seizure, so I always tell people to try and grab me from behind with their hands under my arms so they can gently bring me to the ground. It is very difficult to catch my seizures before I fall, so I tell people to not feel bad if they don’t catch me in time. I also sometimes have to explain what my seizures look like, which can be embarrassing as sometimes I make weird noises or do weird things.
When I tell people about my Epilepsy, they are generally curious and want to know more. This is understandable as there isn’t as much public knowledge about it as other chronic medical conditions. I appreciate this curiosity, because it shows that the people in my life are interested in learning more and want to better educate themselves on this chronic medical condition. I wish that there was already a strong knowledge about Epilepsy, and it would be the same as me telling them that I had a condition that was already well known by the general public. That would probably be the most ideal situation. However, with advocacy I hope to contribute to making Epilepsy better known to the general public and make it so people with seizures could walk around comfortably in society, because they know that people are able to help them in the event of a seizure.
Have a question?? Feel free to ask! Happy Wednesday! Love you all!! xox