Relationships and how they're affected after Epilepsy diagnosis

Sorry for the wall of text: Can relate to your situation and wanted to chime in. I guess I'm lucky since I've never had to deal with any kind of stigma. I've had seizures in class and my classmates have helped me catch up on work and visited me in the hospital. The only person who honestly seems to think a there is a stigma is my mom. The whole shushing me in public thing is EXACTLY what she does, even after 12 years. I guess there is also a co-morbidity with my type of epilepsy and mental illness and she's worried people will think I'm mentally ill or be afraid of me because of the seizures. I don't know if they reveal her own prejudices or just her fear of the assholes I may encounter. Probably both.

I was diagnosed at 16 and my seizures were well controlled until my mid 20s. It was quite an adjustment to going from complete independence to what you're going through now. I had to stay with my parents while deferring grad school. I had a job but I had to work remotely more often than not. No more going to the gym unless I had a ride and someone to watch me, no running outside. I got a cashier's job to make some extra cash once the seizures stopped happening during the day but my dad needed to drop me off and pick me up. I couldn't even ride my bike.

My friends were very supportive but I felt guilty that they always had to be the ones to drive and never wanted to put them in a position where they had to be caretakers after a seizure. It was also so embarrassing to be 26 and living with my parents, especially since my friends were all successful. I felt so far behind and tried to isolate myself because of it. Luckily, my friends wouldn't let me.

It changed romantic relationships. All of my previous boyfriends were aware of the epilepsy but none really had to deal with it. I had started a relationship with a med student and about a month in was when my meds stopped working. We ended up breaking up when things started getting serious. He was great with me when I had seizures and was optimistic they would be controlled again but I wasn't as confident. I kept trying to explain to him that it might be the new normal for me and he just didn't understand. Then he did a rotation in pediatric neurology and saw that some people don’t improve. He was like, "Look, I want to have my own biological kids and I don't want to up the chances of my children having to go through that." He was dealing with families whose kids had daily seizures and had regressed and/or had major developmental delays...maybe that's where the "retarded" stereotype came from. My mom is a nurse and worked with a 6 year old who had frequent drop seizures; he wore a football helmet everywhere and had the speech and motor skills of a 2 year old. I don't blame the boyfriend and I wasn't in love but it's tough to be dumped for something you can't control.

My current boyfriend didn't meet the "normal" me without the medication fog, late night hospital trips and the occasional seizure with pee. I'm not as worried when I have to be dependent on him since he knows what it's like during the worst times and decided to be with me even though there wasn't an end in sight. He knows I'd do the same for him.

New Guy and I want to get married and have kids so we have talked about going to a genetic counselor if necessary but we are both open to adoption. These are conversations we wouldn't have had if I didn't have epilepsy. Posing another worst case scenario question, "What if they start back up I can't ever drive again?" "Then we'll have to stay in a major city with good public transit" "What if my medication causes birth defects" “You said it doesn’t if you take enough folic acid”

I found a medication combination that works for me and have been seizure free for a year. I'm in law school, I can run alone again (although I wear a RoadID with medical alert info) and can drive. It took a lot of advocating for myself; finding the best doctor, pushing for tests and medication changes, arguing with insurance companies. Get second and third opinions if your insurance allows. Educate your family and friends about what to do in an emergency. If you plan on moving, make sure your new area has decent public transportation. Being anxious about the future is normal, being clinically depressed about it isn’t. If a medication stops seizures but it makes you want to kill yourself, call your doctor. Lean on your friends once in a while. Not like "I shit myself, please come over and clean it up," help but "I'm feeling a little seizurey today and don't want to be alone, I'm making dinner and watching Jurassic Park, would you like to come over?" help

Be straightforward about your situation with new guys. Most will not care.

Tell your mom that the shushing bothers you. It makes you feel ashamed of something you have no control over and you shouldn't be made to feel that way.

/r/Epilepsy Thread