Who Hids Their Own Epilespy? | MyEpilepsyTeam

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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)
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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

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

The bottom line is that unless a person has had a seizure, they will never really understand how it feels to have one and all the psychological scarring that comes with them (even neurologists have no clue). I know that both in 2003 with all of that mess when I was having the seizures at work (Treadwell Library at Massachusetts General Hospital) and in recent years when I have had some full seizures in the presence of my father, the result is that people becoming overprotective and reacting as if I have had one (anytime anything of size falls to the floor on the 2nd floor of the house, my father is always assuming that it must be me having one). I hate that I have done that to them. And it puts them into a state of constantly worrying about me which just drives me nuts. However, after hearing the life stories of friends on here over the years, it is much better to have the overprotective family and friends than to have the ones who tease you or the like because they do not understand Epilepsy and Seizure Disorders and do not care to.

posted June 9, 2021
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 think a little bit about it, but not much as anymore when I first was diagnosed with, I didn't know what I had, but after the years of having them I know what I am dealing with, I don't worry about them happening in public or hide them from anyone, I use my own discretion about who I tell, but not ashamed of my condition I have, my opinion

posted February 14

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