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Has epilepsy affected your friendships?

Finding true, supportive friends can be hard for anyone! And when you're living with epilepsy, maintaining friendships can have unique challenges.

Has epilepsy affected your friendships? Has your condition made it hard to make or keep friends?

Tell us about your experiences, and any advice you may have for finding true, supportive friends. 💜

  1. I recently stopped working. All of my work friends still reach out to hang, but I can't drive currently. I can't drink alcohol anymore. I just feel depressed because I'm not the same person anymore.
    I used to be the life of the party, but now it's just dizziness, blurred vision, foggy memories, and forgetting people's names. It's embarrassing and annoying.
    Things like that make me want to stay in. My husband motivates me to come and do things, but I feel bad like I'm stopping him from doing things.
    I am grateful for what I do have everyday, but this condition really takes a toll on us. It's tough for other people to understand everything that we go through.
    Life can be unfair sometimes. We just have to be grateful for what we do have though!
    Wishing you all, All the Best! ❤️

    1. ,
      I completely understand and validate your feelings. It's essential to remember that your husband has chosen to support you willingly. I've had to remind myself of this at times as well. While it may be challenging, always remember that you are not a burden to him; you are his partner.

      I can relate to how epilepsy can impact friendships significantly. If it's an option for you, consider hosting game nights like I did. I prepared fun mocktails and even had a couple of beers available for the night. This allowed my friends to see that I'm still the same person, albeit with some limitations on what I can do. I also openly communicated with them, saying something like, "Hey, my brain might be a bit foggy today, but don't worry. Just know that I might make game night a bit more interesting." This approach helped me feel less embarrassed and put my friends at ease. They understood that they didn't need to "save me" if I forgot something or took a bit longer to remember things.
      Always remember, you are not alone.
      Warmest regards,
      Gabrielle F (Epilepsy Moderator)

  2. I have grand mal epilepsy and take Tegretol / yes I’ve lost friends and also several guys that wanted to marry me when they found out about the epilepsy I didn’t see them again - I had quite a bad seizure at the airport last November and was in hospital as so was on my way to see my dying dad in Italy but so didn’t make it - since then I have bad anxiety regarding having another seizure - I was diagnosed at 12 and have had this anxiety all my life but it is worse now

    1. Focal seizures and petie- mal seizures
      My son has them .I'm his mom and I know he gets embarrassed and scared.

      1. how are you both doing? Caregiving for a child with epilepsy is not easy task. Please know, this community is here for you as you navigate life as a parent with a child with epilepsy 💜. Here's some links that you might find helpful!
        https://epilepsydisease.com/living/helpful-tips-caregivers
        https://epilepsydisease.com/caregiver-resources

        Wishing you all the best! Kailah (Epilepsy Team Member)

    2. It's affected my friendship so much to the point where I don't have any true or real friends it's not easy I hang out to myself and I don't go anywhere just my doctor's appointment 😞

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