Fear of having seizures in front of family
I started having seizures in university, my then boyfriend helped me deal with most of them. I was so embarrassed to have anyone else witness a seizure.
Now we’re not together everytime I go home I worry about having a seizure in front of my family. Because mine started at uni they haven’t really seen them and I’m worried they’ll think I’m a freak. When I feel an aura I usually take myself up to my room, have a seizure, and never tell them. I know this is an awful coping strategy and dangerous but I can’t seem to let them in.
Any advice would be greatly appreciated x
I still find myself anxious over having seizures in front of others even 15+ years down the road, and can fully understand why you are. It leaves you vulnerable.
I very much doubt your family would think you're a freak, and I strongly suggest you sit down with them and talk about your condition. Start with the family member you are closest too and most comfortable with. You will probably find yourself surprised at their understanding, and the support they're able to give you.
A friend or family member witnessing a seizure can prove extremely beneficial to both you and your neurologist in having a better understanding of your seizures. My husband, even at the time he was boyfriend was a huge help in explaining to my neurologist exactly what I was experiencing in the times I had seizures losing consciousness.
Taking yourself off to a private space when you feel an aura could prove to be dangerous for you. You may not have injured yourself, lost consciousness for an extended period of time or had your breathing impaired yet, but it is possible. Stay safe.
Hi
I can hear how difficult this is for you. I can't even imagine how much anxiety this is causing you. I really hope our community members will join this conversation and share their experiences. In the meantime, I wanted to share this article, and take a look at the comments: https://epilepsydisease.com/living/fear-next-seizures. I also wanted to share these articles: https://epilepsydisease.com/clinical/seizure-phobia and https://epilepsydisease.com/clinical/invisible-burden. Please keep us posted with how you are doing. Jill (Team Member)
