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Has Anyone Else Experienced Family And Friends In Denial About Your Epilepsy Diagnoses?
Everyone except for my twin sister, has refused to acknowledge or talk about the fact I have epilepsy. It's actually pretty insulting. While epilepsy doesn't consume my mind or life, it is unfortunately one big part, out of many parts of my life.
It's not that I'm wanting to be coddled every day because of epilepsy, but if you're going to be part of my life, it's very important for you to acknowledge and accept it. Especially if I need your assistance at a random point.
It would also be nice… read more
I feel your pain. My family is exactly the same, its like they don't know what to do or say when I mention it and it's just awkward. I don't tell them anything anymore. I just stick to speaking to my friends and my epilepsy nurse now. My family don't even know what medication I'm on or anything.
I don't tell them when I've had a seizure or anything. My emergency contact on all my forms is my friend. Do you have an epilepsy nurse? My epilepsy nurse is my life line. I am so lucky as I have such a wonderful epilepsy nurse and I can go to her about anything. That has made a huge help for me.
I'm glad you have a supportive family! It's very frustrating to have people make us feel like we're making it up. They are just uneducated, and most don't want to educate themselves. For me it isn't just seizures. It causes issues with my heart and oxygen too, so it has been very dangerous for me and has landed me in the E.R and hospital multiple times. I don't understand why my family doesn't care. But, not all of us are blessed with a good support system.
I get what you are saying. I’ve been fortunate that my immediate and extended family comes from the medical field, and so they have been empathetic.
However, outside of that, it’s hard to make many friends because people often don’t get what epilepsy really is and often times don’t believe what I say. It’s really frustrating because so many people out there have a see it to believe it mentality about invisible disability.
Maybe because of the SUDS and SUDEP that run on my dad's side, my family is not as supportive as I would think they could be.
@A MyEpilepsyTeam Member, Thank you for your kind words!
I also wanted to say something that has helped as I get older.
It’s not the number of friends you have but it’s the close bond and support you have from those friends that matter the most! I would rather have three close friend that understands me and supports me through it all than have 50 friends that run away when my seizures get the best of me.
Long Term Stay
You Ever Found Someone In Your Life That Has What You Have As For The Condition Of Yours And Become A Close Friend , And Are Still With?
I Have Read About People Losing Loved Ones To Epilepsy Is It Epilepsy That Takes Them, Is It What Happens To Them During The Seizure.
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