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Epilepsy Blog Relay: Tips to feel less isolated and alone after an epilepsy diagnosis

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

Michael’s Story

My name is Michael I live in Long Island, New York and I have had epilepsy ever since I was 13 years old. I had movements prior to me having a seizure in school, but no one believed me. I also have hydrocephalus. That is a condition in which there is too much water built up in the brain. My doctor believes that is the reason why I have epilepsy. Nevertheless, I have had around 4 ‘s words’ (seizures) throughout the whole time I have had it.

I am 20 years old now and take medications; that has kept it under control. Now, notice how I wrote ‘s word,’ I find it hard to even say. The word makes me feel bad every time I hear it. I would rather people just say I had a brain storm. I still live with epilepsy and I do get depressed at times. Sometimes I get tired easily and I have a bit of a learning problem due to my epilepsy. All through high school, I did feel like I was labeled as the kid with epilepsy. It’s hard to find people who support me. No one that I know of really has epilepsy. That is why I posted this blog, in order to get support and maybe help others. I hope others can read this and we can continue to help and raise awareness of epilepsy.

If you are feeling alone, here are a few more articles that might help:

If you were just diagnosed with epilepsy:


NEXT UP: Be sure to check out the next post by Michael at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

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2 Responses

  1. Avatar
    Alison Zetterquist
    | Reply

    Hi Michael,

    Oh, please don’t feel alone. You know the statistics: 1 in 100 people have epilepsy , and 1 in 26 will encounter it at some point during their lives. Many of these people have been able to control their seizures via meds or other methods and, thus, they may be invisible to you. However, the more open you are about yours, the more you’ll find that they slowly emerge and can become a part of your life if you wish.

    Easier, though, is to go to a support group sponsored by the Epilepsy Foundation’s New York Affiliate. I don’t know if there’s one specifically dedicated to Long Island, but the New York chapter is especially strong. In my case, I do volunteer work with Epilepsy Foundation New England, and its support, including social, is amazing. There are a good number of Facebook groups, but I’ve find a particularly supportive community on http://www.myepilepsyteam.com.

    Good luck to you. I just know you’ll find your people.

    Alison

  2. Avatar
    Malory
    | Reply

    Hi Michael! My name is Malory Williams, and I was diagnosed with epilepsy when I was 21 years old. I was finishing up my senior year of college, applying to law schools, and competing in Miss Mississippi USA. I felt that I had no control over myself and that discouraged me from working harder to accomplish my dreams. I suffered from depression, suicidal thoughts, and anxiety. I too isolated myself from others, which did not help. I am working on a book for those who suffer like you and me. I want to inspire others to follow their dreams, despite their disability.

    Best,
    Mal

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