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Epilepsy Blog Relay: Expanding a support system through encouraging relationships

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

While I wish epilepsy didn’t affect relationships that I have, it is a part of who I am, and it affects every single relationship I have. But, I am lucky. I am so very lucky. 99.9 percent of the relationships I have are with people who are supportive, compassionate, helpful and encouraging.

That said, when I think about epilepsy and relationships, the first people that come to mind are my immediate family, specifically my husband (two dogs, even though I know that’s a little out there), my mom and dad, and my brother and sister-in-law. That’s my team. That’s the team that will always rally around me and that is the team who will lift me up when I am down. Those are the easy relationships we can all relate to.

When it’s not so easy

But, what about those slightly more difficult relationships? What about the times when you share your story and it “scares” people that you are inevitably around? And, as a disclaimer, “scares” is probably a strong word, I should probably describe it as what “concerns” people that you are inevitably around.

I recently started a new job. It’s been a great change for me, but as you might expect, what comes with a new job, comes new relationships. What come with new relationships… explaining “my epilepsy” all over again, to a new group a people, in a new set of circumstances. You get the picture. It’s intimidating. I cannot speak for everyone, but every insecurity that I had as a teenager living with epilepsy is back. I start to question myself… what if telling them changes how they see me? Will it be okay if I have a seizure and have to miss a day to recover? And so on… So, guess what? For a while, I kept it to myself. I choose (once again) to not tell people upfront. As I slowly gained confidence in my role and felt like I knew everyone better, I decided to tell people my “secret.”

A positive surprise

And, what do you know? Every response I got was the same. First, what can we do to help you if you happen to have a seizure while you are with us? Second, it was you do whatever you need to stay healthy… All of the people I was building relationships with now were supportive, compassionate and helpful.

My feelings of shame and embarrassment were gone. And now, my support system is even bigger than before which is good, because I spend a lot more time at work!


NEXT UP: Be sure to check out the next post tomorrow by Jennifer at https://timetobuildcastles.wordpress.com/ on more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET.

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Contributing Writer

Abby Gustus Alford was diagnosed with epilepsy at the age of 12 after multiple grand mal seizures over six-mos. She has a BA from Purdue and her Master’s from Northwestern.