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10 Things Having Epilepsy Has Taught Me

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Before I became ill, I was a person who planned everything from A to Z. When I became sick all of those things had to change. All of a sudden my illness controlled my life. It was hard for me to let go of the reins and just live my life. Here are 10 things I learned from having epilepsy. Some of these things surprisingly changed my life for the better.

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1. Doctors don’t know everything. I went years without being diagnosed and saw many doctors to no avail. I had to trust myself and my body, trust that I knew that something was wrong with me and eventually I would get the help I so greatly deserved and needed.

2. It is OK to not be OK. I used to be so hard on myself when I had days that all I did was cry, or I could not get out of bed. It took me a long time to understand my body wasn’t OK and it did not matter. It was fine if all I did was watch TV that day. It was OK if I could not get out of bed, because I was fighting every day to be OK and that was enough.

3. Things don’t always have to be extravagant. I used to enjoy skating and dancing and going out to clubs, big events, traveling and all of that. But when you’re chronically ill, you have to enjoy the little things. A cookout at the house so I can stay home and eat. Watching movies at home instead of going out to the theater. Painting my niece’s nails at home instead of taking her to the nail shop.

4. People are going to judge. In this world, some people can be so cruel. They are going to judge you for not working or going to school. but so what? They don’t deal with what you deal with every day.

5. Cherish life. When you’re ill, life moments like birthdays and family events can feel so much more important and should be cherished more than before. You realize you never know what could happen or how you will feel the next day, or for the next family event.

6. Even your family may not understand. Just like your friends, your family may not understand, or may stop understanding. They may stop being there for every hospital stay or surgery. They may stop asking how you’re doing or stop checking on you as often, not because they don’t care but because they don’t understand.

7. It is fine to miss who you used to be. I used to be a dancer and a skater and wear 7-inch stilettos, but I can’t do those things anymore. Sometimes I miss being that person so much that it makes me depressed. I had to learn that I can miss that person, but I should do so in admiration for who I used to be, not in sadness. Yes, my body is different, but I’m still the same person inside. I need to admire myself now, because I’m stronger and more emotionally secure than I was before.

8. You deserve everything everyone else does. I used to feel like I couldn’t be happy or enjoy my life like everyone else did, but I deserve it too. It is still my life to live and enjoy, even if I do so in different ways sometimes.

9. Fight for yourself. As I said before, doctors don’t know everything, and sometimes you have to fight for them to listen. If they don’t, go find another doctor who will listen. Fight until you get the help you need.

10. Pity sucks. People will pity you, and it sucks. It can make you feel useless, and quite frankly pity itself is useless. But I believe people pity because they do not understand how to show empathy, and most people don’t know how to show that unless they’ve been through the things we have. And that is their fault, not yours.

A disability and more specifically epilepsy can be difficult and challenging, but it can also teach you some life lessons and give you some memories you may have never had otherwise. Sometimes we have to look at hard things with a positive outlook.

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Thinkstock photo by Hemera Technologies.

Originally published: March 6, 2017
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