The Mighty Logo

What My Epilepsy Looks Like

The most helpful emails in health
Browse our free newsletters

A bit of background: I was diagnosed with epilepsy this past summer, in July. I was originally misdiagnosed with bipolar disorder in Novermber of 2016. I’ve had “panic attacks” since I was very little, as well as fainting spells no one was ever able to explain, and I thought the micropsia I’ve always experienced was “normal.” My step-mom, a nurse, was the one to suggest I see a doctor when I began having staring spells. Once the neurologist told me that these were all likely seizures during the first appointment, things just made so much more sense.

I started reading other peoples’ stories, to see how mine compared. Doing so, as well as this being the tail end of Epilepsy Awareness Month, made me decide to take a step back, take an overall look at my story, at my epilepsy. It’s encouraged me to express how living with epilepsy is for me, especially now that I know my symptoms for what they are.

Other relevant stories:
Epilepsy Life Expectancy
How Many Hours Should a Person with Epilepsy Sleep
Can People with Epilepsy Drive

So this is what my epilepsy looks like:

It doesn’t outwardly look like anything most of the time. It never really has. It looked invisible before, like anxiety, mood swings, tics that made no sense but were infrequent enough to be brushed off as nothing until they weren’t. Except “weren’t” came later, recently.

My epilepsy is joking about it even though it really has moments where it scares me. It’s sitting in class holding my left arm over my right so maybe the jerking on that side won’t be as noticeable, only to have my left shoulder jump and my head twitch to the side despite uselessly telling myself to just stay still. It’s having to lay down halfway through cleaning because my head goes dizzy and achy and things look so small when I know they’re not. It’s laying down to make sure I’m not going to fall if I have a seizure, because I’m terrified that despite never having a grand mal, this will be the time I run out of luck instead of having a staring spell like I usually do.

It’s being afraid to drink or eat anything while having a series of myoclonics on the off chance I spill something or choke, even though I haven’t eaten since breakfast, it’s six in the evening, and I’m starving. It’s arriving as close to class times as I can without being late on the bad days because I know loud ambient noises like a roomful of people talking will sometimes trigger a seizure. It’s being afraid to go to the movies with friends because of the same reason. It’s playing with my alert bracelet in public when I feel an aura, wondering if anyone will notice I’m wearing it and if they’ll panic or call for an ambulance, not knowing why I’m just sitting there, staring and unresponsive.

It’s the other night when I was jarred awake because someone in my dorm building set off the fire alarm. It’s realizing the bright lights flashing on the alarms are unbearable, realizing for a terrifying few seconds that I can’t move right, I can’t grip the door to get out, I can barely stand, and something may be wrong. Then having the sinking feeling minutes later when by some miracle I get myself outside and realize I may have dodged a serious bullet by the skin of my teeth.

It’s the relief I felt initially once I received my diagnosis, the pure joy I felt that I finally have a name for all of this. Then it’s the quiet moments a few hours later, once everything has been processed, when I realize what epilepsy means for me. It’s the soul-crushing despair that comes with realizing my dreams of working in federal law enforcement are next to impossible now. But it is also the moment of resolute determination immediately afterwards that I will not let this run my life, and if I can’t have the specific job I wanted, then I’ll do the next best thing and teach people what they need to know to do it instead.

However, more than that, it’s realizing that while things got worse to the point they couldn’t be brushed off anymore, I’ve made it 20 years with this. By that logic, I can make it 20 more, and 20 again without my epilepsy ruining who I am. My epilepsy defines me, but not in a negative way and not how people tend to think. It’s one of the many facets that make me, me. It always has, even when I didn’t know its name, knew it by another title and thought it a completely different beast. It’s a mountain I’ve been unknowingly climbing and defeating for 20 years before realizing it for what it is. It may have gotten ahead recently; it may do it again. However, it’s a mountain I’ve conquered for 20 years, and it’s a mountain I will continue to climb for 20 more.

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

Photo by Rigel / Getty Images.

Originally published: November 29, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home