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5 Things to Know About Your Loved One With Epilepsy

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As I’ve been more open about my epilepsy in my young adulthood, the more people I’ve encountered who either secretly struggle with it themselves or care about someone who has seizures for various reasons.

So, to help those people who don’t walk in the shoes every day, so they say, here are a few things that your loved one may want you to know — from a fellow epileptic’s perspective:

Other relevant stories:
Famous People with Epilepsy
Epilepsy Triggers
Can Flashing Lights Cause Seizures Without Epilepsy

1. We may always feel a little afraid. It doesn’t mean your loved one with epilepsy wants you to feel sorry for them. It simply means there are a few more butterflies when we get behind the wheel, or when our spouses go out of town, leaving us to sleep alone for the first time in a while. It certainly doesn’t mean we can’t enjoy our lives! If anything, the fear that it could be taken away at any minute motivates me to enjoy each moment that passes.

A lot of times people (myself included) are afraid to admit that, even more than fear, anxiety tends to accompany epilepsy. A sudden feeling of suffocation, sweating, or tingling are all typical of your run of the mill panic attack — only we may think we’re about to have a seizure, not a heart attack. Please, bear with us.

2. If we tell you something feels “off,” we mean it. A majority of us have learned subtle ways to differentiate our panic/anxiety attacks. What does that mean for you? If someone with epilepsy tells you something feels weird, they have an aura, or anything of that nature, simply believe them and stay with them regardless of if something actually happens.

Obviously, someone who doesn’t typically display the signs of anxiety should be taken extra seriously (if that’s a real thing) when an aura comes on. (Note: Not all epileptics experiences auras at all, and some only a portion of the time. For many, it comes straight out of the blue).

3. No, we will not swallow our tongue. It’s not a huge deal by any stretch, but I get asked this question All. The. Time. “What should we do so you don’t swallow your tongue?” Absolutely nothing. Because we scientifically can’t. Don’t believe me? Google it.

Fun fact: Not everyone is triggered by flashing lights, so yes, I have played laser tag and cosmic bowled before.

4. It can take a long time to recover, and we’re sorry. Especially for those who have grand mal seizures (where you shake violently and lose consciousness — that’s me!) recovery can be an hours-long process if not more. The muscles are so tense for so long, doctors have told me it’s the equivalent to running a marathon in a matter of minutes.

What does that mean? It means I can sleep for hours on end after a seizure without meaning to. One time I slept all the way from Mount Pleasant, South Carolina to Savannah, Georgia while my poor husband drove us after my spring break seizure.

5. Stuff you might not think about can mess with medication. The next time you to try to convince your epileptic friend she just has to try the newest detox with the magical-tea-herbal-cilantro-chamomile-ginko-biloba nonsense, respect her if she says she has to check with her doctor. And please, for the love all friendships, do not by any means pull out your phone to Google medicinal interactions. Just, just don’t.

6. And that medicine can be expensive. OK, so that’s more than five, but this one’s important, especially considering the medication is not only expensive but necessary. That’s why you may have noticed many epileptics and others with chronic conditions have become hypersensitive to the current state of healthcare in our country. Guess what classifies as a “pre-existing condition?” Yep, you got it!

So, all that being said, what you can do to help your loved one and others in the epilepsy community? For starters, continue to support and love them unconditionally.

For a wider reach, check in periodically with your local epilepsy chapter for fundraising events in your area! Strapped on cash? Then share articles or posts like this to raise awareness for those you love!

Even if we forget to say it frequently, thank you for being there for us.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by VOGOPHOTO

Originally published: May 2, 2017
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