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How to Start Telling Your Epilepsy Story

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It has been seven years now since I really began telling my epilepsy story. Now, it’s almost second nature when I have to explain or tell my story. However, that definitely wasn’t the case back when I first got started. I know how hard it is to open up, trust me. If you feel like you want to, but are stuck, I want to share what helped me through the process. If you’re someone who thinks this isn’t possible, just take a minute and know these tips can be done over the course of years.

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Get to Know Yourself First

Sounds silly, right? Before I really began speaking out, especially online, it was all about getting to know who I was personally. What did this entail? For me, it was figuring out my confidence. Heading off to college, I realized life was really about taking chances. I needed to find that balance between relaxing on my own and going out and meeting new people. Did I like randomly going out? Not really, but I knew it was a change I needed to make. I started branching out, meeting new people which gave me the confidence I needed as school started. I’m not a very outgoing person, and that confidence ended up allowing me to build one crucial friend group for years to come.

Start With Your Closest Friend(s)

Easier said than done. Having epilepsy is something we battle every day and the last thing we may want to think about is opening up to people. However, all it took was a conversation at a lunch table with my closest friend to get it all started. Notice how I started with just one. It’s easier and you can feel more comfortable when talking to just one person. As time went on, I began telling only my closest friends and their responses were all the same: how can I help? At the time, this was almost shocking, but made me feel great knowing that they would be there for me if needed. It all starts with one person, and over time, you may begin to feel more comfortable knowing that people are there for you.

Take Advantage of the Epilepsy Community

As I told my story to the majority of people I came across, I forgot one thing: our epilepsy community. Whether it’s your local community or groups on social media, we all live with the same thing. Sharing your story with us (the epilepsy community) is a much easier way for those still not comfortable because we know how people will react: helpful and positive. Reach out and talk to us, there are plenty of people who are ready to hear your epilepsy story because they are also living with it.

Those are the three big things that helped me get to where I am today and feel safer sharing my story. If you’re just getting started or hoping to share soon, I do advise staying off public social media. Stay within friend groups and the epilepsy community. It’s much better!

Originally published: September 23, 2020
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