Everytime I talk to someone about my seizures or my experiences with epilepsy, they say “oh I’m sorry, I understand what your going through.” I just look at them and think to myself “No you don’t. You don’t know what it’s like to not have control over your body and shake uncontrollably. You don’t know what it’s like to live every day scared that at any moment you could have a seizure.” They are better off just being quiet or at least say something like “I… read more
I understand you struggles too. I’ve been through similar situations.
I finally figured out that instead of being frustrated , anger, offended and ect , that I have to turn to a teacher. I ask what they know of my disorder and try to go into better details to help them understand a little better . I the person or people want to know more or ask me questions, I would explain to my best acknowledgment.
If they don’t want to know or don’t care , then I tell them to stop before they up with their foot in their mouth. They don’t care about understanding and they just need to keep their mouth shut .
Me and my wife understand what you mean about people not really understanding. My wife worries at any moment I am going to have a seizure. She has seen me turn blue, stop breathing and put on life support. The rest of my family never stay in touch. Perhaps they are frightened of what they will see but my wife needs help and because she is my carer someone who understands. We both try and relax with music, we have a cat that understands and my wife has started sowing to take her mind off the bad things.
I totally get it. My husband had a rare form of cancer there was no treatment. Docs gave him less than 2 years. But he lived 12. People shyed away from us or just wanted to pretend it didnt exist. Than My daughter becamei ill Docs say its a not yet discovered neuro illness. U can imagine very little support. Now im having seizures pretty much no support. My sister actually said she thinks The doc is exaggerating my illness.
( she drove me to the doc and came in for the appointment). I basically just ignore it. I normally take the bus. But i was having alot of seizures at that time and felt uncomfortable taking the bus. I always pay her whenever she drives me. Ive learned it takes a special person to truly understand unless they have been thru it themselves
I feel your pain too! Ive been having my seizures for 15+ years now! Ive had brain surgery to help reduce them! So far so I think when it comes to my surgery! Im still having seizures, but not as much or as bad anymore!
Oh God's..yes. Exactly that!! You said the feelings I have exactly. I never say anything to the its ok and the your ok folks cause they mean well. But yes.. I know how u feel. I told my ex. Theres nothing u can do..just lay down beside me and touch me lay ur arm on me or lay ur hand on my arm. And u can talk or sit quietly..just make sure I wake up afterwards. Thats all I ask. He woukd talk to me about video games..haha they make him happy so he would drone on and on..haha.. Although once I had a more mild one and we both fell asleep..i was like what happened to make sure I dont die. Lolol :) he was an ass and narcissistic but he handled my seizures with the best attitude. Its why I stayed with him as long as I did.