IT HAPPENED TO ME: I Have Epilepsy and It Makes It Hard to Date
His first gift to me was a sterling silver ID bracelet. Engraved on the top, in beautiful, thin, cursive was one word: Epilepsy. On the under side was my full name -- Alison Jordan Segel -- which I never heard unless I was in trouble, and my parents’ phone number. He must have assumed they were my emergency contact.
“It would’ve been really romantic if he’d put his own number,” I thought. Like that would solidify our commitment.
(In a relationship -> Engaged -> Listed on my Medic Alert Bracelet.)
Growing up, I was told I was a fainter, someone with a weak disposition. I was a reactor, a little girl with a highly activated fight or flight response to every situation that would, on many occasions, cause me to deal with stress by passing out. I imagined myself a corset-wearing Victorian debutante with a tendency to swoon.
It wasn’t until I actually began convulsing later in life -- my first big seizure was on an airplane flight from Los Angeles to Boston -- that I was actually diagnosed with epilepsy and began taking medication.
I take pills in the morning and pills at night. Sometimes my dosage makes me out of it or lethargic. Sometimes a new medication will make me lose weight, and I milk crop tops for all they’re worth. Then another might make me gain. Most of the time I am totally, completely, and utterly fine, and I feel entirely myself again.
The only time I don’t feel like myself is when it comes to dating.
We come into relationships with all kinds of insecurities. Maybe you have a crazy family. Maybe you come to a relationship with thousands of dollars worth of student loans. Maybe you’re “one boob is bigger than the other" girl. Maybe you have a regrettable Tweety Bird tattoo you got after one too many drinks, or maybe you talk in your sleep.
I date with a disorder. Epilepsy. For me, it’s mostly an invisible disability. Some of my friends and family don’t even know I have it.
What I fear is others’ perceptions of epilepsy. The foaming mouth, the spoon in tongue -- that’s not me. I laughed out loud in theaters when epilepsy was given as a possible diagnosis for Eric Bana’s ability to time travel in "The Time Traveler’s Wife." Where’s the movie where the meet cute involves a charming female epileptic falling for her hot EMT after having a seizure? Dare a girl dream?
Epilepsy has never given me X-Men like powers, or a visit by a Vatican Priest for an exorcism. Epilepsy only gives me a CVS pharmacist who knows me by name.
Frankly, my fears, my constant medication taking, and their sometimes roller coaster of side effects have made me a bit date-a-phobic. I’m a full-grown adult afraid of intimacy, who has settled quite comfortably for the fling and the one-night stand.
Maybe, and likely, I have this fear of intimacy because I haven’t quite come to terms with my illness. I have a fear of being judged, left or misunderstood. I don’t want to depend on a man to help me if I get sick -- that makes me feel weak and co-dependent. I still call my parents for help.
And it doesn’t help that each time I begin to date someone new, the same old questions start running through my mind.
When should I tell him? Date one? Once we’re in a relationship?
Where should I hide my pill cases?
Will he think I’m a drug addict or a prescription bottle fetishist?
How can I covertly take my pills at night, and if he sleeps over, again in the morning?
If I plan on sleeping out, I need to remember to take my meds!
He BETTER not surprise me with a spontaneous trip to Italy, because I don’t have my pills with me!
Is this shopping spree for my new summer wardrobe going to last all day? Because I need to be home for my nighttime dosage.
OK, so, some of those might be dream scenarios, but even fun activities come with concerns, and my Greatest Hits Album of date disasters doesn’t help my confidence either.
There was the blind date where I began convulsing in front of an all-you-can-eat brunch buffet. I never saw him again, although he did text me to ask if I was doing OK, and to tell me he had my sweater. I let him keep it.
Then there was the boy who took me to a club, but the sheer power of the bass and the constant use of strobe lighting kept me hiding in the bathroom for so long that he must have been convinced I had a serious cocaine problem. He took me home by 11 p.m., and I haven’t heard from him since.
Then, there was the abusive ex-boyfriend, with whom I willingly stayed in a relationship because he convinced me that no one but him would love me or want to take on the burden of my disorder. No man, he said, would want that for the mother of his children.
Thankfully, my medications have regulated my seizures for years, and at 27 I finally came to the conclusion: I’ve been in a relationship with my illness and fears for so long that it’s been preventing me from being in a healthy, honest relationship with another person.
And that’s when I met him. And on our first date, I told him about my disorder. And on our second date, he gave me a sterling silver bracelet, with one word engraved in cursive: Epilepsy.
We all bring insecurities to relationships. Maybe you’re not the weight you wish you were. Maybe you’re still a bit in love with your ex. Maybe you’re afraid to give up your independence, or maybe you’re afraid to be vulnerable. Me, well, I have epilepsy.
But what if we didn’t look at these things as baggage, and instead just viewed them as things that make us who we are? My epilepsy isn’t an extension of me, it’s not something I have to explain, justify, or hope someone will accept. It’s who I am, and frankly, it’s not that big of a deal. I’ve learned that the more accepting I am of my own “flaws,” the more accepting other people will be of them, too. I’m happy with who I am today, disordered dater or not. Because maybe if you open up to someone about who you truly are, they’ll surprise you.