Connect with others who understand.

sign up log in
About MyEpilepsyTeam
Powered By
Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
Who Hids Their Own Epilespy?
A MyEpilepsyTeam Member asked a question 💭

All my life, since i was diagosed with it, i try hide it especially in front of strangers. I dont want my frriends or family to worry. And they REALLY dont understand it either. My dog helps me through it all every day. My dogs are the reason why i get up in the morning.

posted June 1, 2021 (edited)
View reactions
A MyEpilepsyTeam Member

Hiding my Epilepsy is impossible. My seizures can happen at anytime and anywhere. So if I’m outside of my home, in public, or around many family,friends and maybe a few people I may not know, I could get hit by one of my seizures.

I’m also open at talking about my Epilepsy to others. How ever they take it in is up them. Whether they decide to flee from me or they decide to keep talking to me wanting to learn more.

People who flee from us are also the ones who wouldn’t dare to be friends us.

posted June 3, 2021 (edited)
A MyEpilepsyTeam Member

I know how you feel. I have told my family and my friends. Most just tell me to get over it and move on. It makes me so angry. I was diagnosed less tan 2 years ago. I have reached the point now that, I only tell people when Necessary. When I have a seizure in public, I let my bracelet do the talking for me. People can judge all they want, they will be judged for their thoughts & actions one day.
All I know is, when people don’t want to undertand something, they choose to be ignorant of it. Epilepsy is possibly one of the most least explained and shared. Yet everyone knows someone who has it.
After all these thousands of years of knowing about it, only the last 50 or so years have we made any progress. That’s why Doctors can only PRACTICE medicine, in my opinion Oy

posted June 8, 2021 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I totally understand what you’re going through. Of course you don’t want your family and friends to worry but then again it’s also good that if it does happen having a seizure in front of them they’ll be right there to make sure you’ll be OK. And I totally get the in front of strangers, because of course they would freak out and it’s embarrassing, but then again like I said if you can’t control them there’s nothing you can do.
As for me back then I was the same way I wanted to hide my epilepsy, but I couldn’t control my seizures. They just appear when they want to appear and freak everyone out even strangers, but in a way I was glad that my friends knew and saw what happened, so when I would have seizures they know what to do when I tell them what to do if it happened again.

I do or at least did get angry every time I would have a seizure in front of my family. they would say you’re OK it was just a seizure. And I would get mad and say you see it I don’t, I feel it, you don’t. I would say don’t say it was just a seizure I am OK until you have one yourself because you don’t understand what it’s like having a seizure… That’s what I would say out of anger.
But it’s not our fault how things go wanting to hide what we have to deal with, just like any other diagnose out there in this world if we don’t have it we don’t understand it like others don’t understand our epilepsy if they don’t have it.

posted June 2, 2021 (edited)
A MyEpilepsyTeam Member

I do tend to hide it. I think because it’s relatively new to me I just find it embarrassing. No one has judged me to my face but I don’t really like making a fuss of it

posted June 6, 2021
A MyEpilepsyTeam Member

I dont try to hide it but i do keep it to myself most of the time. If you tell people you have epilepsy they have no idea what it really is most of the time. But its never anything you should feel like you need to hide💜

posted June 2, 2021

Related content

View all
Does Anyone Have Nocturnal Seizures In Their REM Sleep?
A MyEpilepsyTeam Member asked a question 💭
A MyEpilepsyTeam Member asked a question 💭
Who Is Eligible For VNS?
A MyEpilepsyTeam Member asked a question 💭
Continue with Facebook
Continue with Google
Your privacy is our priority. By continuing, you accept our Terms of Use and Privacy Policy.
Already a Member? Log in