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What I Wish My Friends And Family Knew About My Epilepsy

A MyEpilepsyTeam Member asked a question 💭
San Francisco, CA

Sometimes it's hard to help those closest to us understand what life is really like with epilepsy. What do you wish they could better understand about epilepsy?

May 28, 2015
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A MyEpilepsyTeam Member

I wish my mom and society understood what a seizure feels like. Numerous of times I have heard my mother tell me how much it has scared her over the years and that she is just looking out for me. I'm thinking to myself who the hell wants to feel what I feel. It's a oncoming feeling that makes me want to tear my skin off the body. Even when I'm not feeling well I refuse to tell her and Richie to prevent the 1000 questions that are expected. Tired of society discriminating against people like me and assuming we cannot do there job. Newest thing jobs are doing is asking a person if he or she has a disability. Why should I and everyone else feel obligated to answer something personal or irrelevant to the job. As a person living with epilepsy I'm tired of being judged. I'm like everyone else just looking to live normally amongst society. Is that too much to ask?

June 4, 2015
A MyEpilepsyTeam Member

I wish everyone could understand:

1. All actions during seizure activity are not intentional or aimed at you specifically!
2. After seizures I lose my appetite, quit pushing me to do something I can't at the time!
3. Medications make you tired, very moody, & lose motivation! Try to be more understanding 'cause if I seem mean, I'm just not myself it's the medication talking.

If people could just be more compassionate & understanding that life is harder on people w/disabilities, it would be such a relief rather than just judging or assuming your making this stuff up!

May 29, 2015
A MyEpilepsyTeam Member

I wish they could be inside my head for just one minute and everything would make sense. The meds change you, make you feel icky and moody. Some days are great and some are really bad....we have no control over that.

September 18, 2015
A MyEpilepsyTeam Member

I wish my family understood what it's like on this side of the seizure. I have to hear how scared they were and how my bleeding tongue freaked them out or they were so afraid when I started turning blue etc... I'm like, yeah, well you should feel how my body is aching right now and I can't eat because my tongue is sore and I don't want to roll out of bed because my body and head hurt so much. But I try not to say much because I don't want to seem like a baby. I've been going through it since the age of 12 and what would I be like to whine about it every time? Cry baby! My husband especially doesn't get it. He acts like as soon as my eyes open I should be myself and jump up and start taking care of the kids and doing everything I normally do.

June 2, 2015
A MyEpilepsyTeam Member

What a Godsend to see I am not going through this alone. My family acts as though this is something that will go away or just ignore completely. My bad days I stay in bed and all I hear is that I should get up and out to feel better. If I complain about my memory or brain scramble after med change, I hear 'dont worry-its just old age' or 'my cholesterol pills make me feel same as you'. Feels good to get it all out sometimes to those who KNOW!

January 31, 2016

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