What Burdens Do You Carry?
Living with epilepsy can often feel like a heavy burden—one that affects yourself, your family, and your friends. This forum is a safe space to share your experiences, challenges, and coping strategies.
My burden has been major side effects from meds, surgery that per my surgeon “was not a cure”, inability to remember many words- simple words- including simple medical field words and I’ve been a nurse for 27 years (could not come up with the word ‘syringe’ several times), short term memory issues, being able to process information being said to me too fast or too detailed. I know these are common in many of the other commenters. One other issue for me is that I was only diagnosed with epilepsy 2 years ago. It’s been an absolute roller coaster journey, and I’m still on it, with an incredible medical/surgical team and thankfully in the 21st century.
Feel awkward about unable to remember peoples names and family memories, I read a lot to stimulate my brain and help it grow so hopefully I can remember better both the past memories and future ones to come...
Loneliness and boredom are the biggest ones.
I am trying to be a good parent and wife while dealing with all that Epilepsy brings to me everyday to deal with. And also knowing that my maternal uncle died at 28 from SUDEP.
