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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.

Its Hard For Me To Talk About My Epilepsy . Ive Always Been Ashamed Of It . Howw Do You Deal With Emotion Side Of Epilepsy

A MyEpilepsyTeam Member asked a question 💭
Independence, VA

How do you deal with emotional side of epilepsy? And not feeling ASHAMED of having it?

May 2, 2015
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A MyEpilepsyTeam Member

Do not allow epilepsy to define you. That is correct. And if your medication regimen is working well for you, do NOT allow anyone to use you to try new medications. I did that one time and the neurologist I was seeing refused to believe me when I told him that the new medication was actually causing me to have seizures. In other words, don't be a test dummy. If your medications aren't working well enough, have a talk with your neurologist and get a new regimen of meds set up for yourself. But learn about the side effects of the medications BEFORE changing to take them.

June 13, 2023
A MyEpilepsyTeam Member

Be hurt and angry. Then be confident and brave. If possible be forgiving but KNOW that YOU are not your epilepsy.
An individual HAS an illness; they are not the illness.
Acne is a skin condition people HAVE they are not their acne.
I rest my case. 😊💜

May 21, 2023
A MyEpilepsyTeam Member

There is no reason You should be ashamed of your epilepsy. It is not a problem You asks for, it is NOT Your fault for having it. I have had this problem for over 50 years. There is no telling what You can do if You have not tried doing something new. John Roberts, a Harvard Law School Grad is the Chief Justice of the Supreme Court, he has epilepsy, a Gold Medal Olympic Champion that has set world records-Florence Grifith Joyner had epilepsy. I have a VNS now and will be getting a new and improved one in the future. Use every possible way to beat Your epilepsy, and don't give up. I know that is easy to write and very frustrating to do. So use every possible thing You can to help Yourself: find a new Dr. if You don't like the one You have now, remember Dr.s are sworn to keep secrets. If Your medication is making you uncomfortable because of the side effects, Your Dr. will find a new one. One of the most important things that I think everybody should do is ask their Dr. any question they have. If You have any questions from my experiences don't hesitate to ask.

February 26, 2023
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A MyEpilepsyTeam Member

Don't be ashamed we are all imperfect thats life seizures just happen to be our imperfections me I make jokes about my grand mals and have my friends joke with me we all laugh our asses off and then we are back to the way life was before! all y'all need to realize how strong you are for making it through all the seizures we go through and getting back up like no worries y'all are gangster and don't even know it all I can say is stay up stay strong and live the best life you can 💯 nothin but love !

June 10, 2023
A MyEpilepsyTeam Member

I am so sorry, I wish you didn't feel ashamed. Shame is something that other people give us. You didn't do anything to be ashamed of. You are a beautiful person and living the best that you can with what you have been given. I understand that some people just don't understand what it is like to have epilepsy. They may be scared of it and don't know how to talk about it with us. I really wish you the best and hope you find the support and medical help that you need.

May 30, 2023

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