I was diagnosed with epilepsy December 2016 and my family has yet to acknowledge that I have a very real medical condition. If they happen to for a second they immediately follow-up with, "Well, at least it's not cancer." Which is true I guess, but it still feels terrible that they are minimizing my illness. They accuse me of never wanting to be around them (completely untrue) but, being unable to drive, the real reason is that they refuse to help at all with transportation. Has anyone else… read more
Also don't let them use the lines about everyone else or worse conditions. You are not everyone else. People all deal with things differently.
Well I have seizures, and had a seizure and I almost lost my life, 4 times. I was hit by a train, almost hit by traffic while crossing the street, when I had the seizure. I've also saw people get robbed while having a seizure.
You're not alone. My illness is not seen as a "Real illness" by many of my family members. I'm lucky to have a few that are knowledgeable of seizures. Others are ignorant and some just don't care.
Its 20 years later and some of my closest family still don't get it or understand it. Good luck, I hope they soon realize what you are going through and try to get themselves informed about your diagnoses and how to support you. It is very difficult to go through this without support .....even from one family member or friend....I am blessed to have a few.
Writing as the mum of a young adult daughter with E: there is so much misinformation and lack of understanding about epilepsy, it's mind boggling. Even within the medical field, we've witnessed countless lame comments and hysterical reactions. I reckon it's one of the least understood neurological conditions, especially given how prevalent it is (compared to, say, Parkinsons)
I am SO grateful for the Epilepsy Foundation, which has been a huge source of information and support for us. Jo also has a great neurologist, who truly 'gets it' how profound the side effects of both seizures and medications is for people with E, and how much it affects daily life.
I've found the best approach is to gently but persistently educate family and friends. This is very hard, as I well know, largely because of people's preconceptions and their fear and ignorance. We have a very far-flung family, so mostly connect via Facebook etc, but I've been so disappointed that almost none of the extended family ever asks how Jo is doing or reaches out to her directly. I know it's because they're uncomfortable talking about E.
I really pushed Jo to connect with others who have E, as that's a shared experience that NO ONE else can really understand. Even though I've witnessed hundreds of her seizures, I know that I'm a total outsider, and can only imagine what it's like to deal with the fall-out over and over again.
Sending hugs to all of you struggling with this pervasive condition. Let's keep educating others, until epilepsy is as understood and acknowledged as diabetes!
We never share your personal information with anyone.