Epilepsy Talk
Epilepsy and Romance — Getting Personal | August 10, 2012
Romance is so many different things to different people. But to me, intimacy requires acceptance, faith and loyalty. The question is; how do you get there? Especially when you have epilepsy?
Well for me, it was a very rocky road. Especially when it came to telling a guy I liked or was becoming involved with. I was hesitant to tell him my “dirty little secret” because I was afraid he’d head for the hills. But since I couldn’t control when a seizure struck, he’d often find out sooner rather than later and head for the hills anyway.
So the question became: Do I tell this person that I have epilepsy? When should I tell him? How much should I tell?
Common knowledge says, you shouldn’t disclose “your condition” until you’ve “broken the ice.” Well, I almost broke my head on a first date — instead of the “ice” — and the poor guy thought I had died on him! On the other hand, I told a guy I had been seeing for a while that I had epilepsy. Instead of asking questions or showing interest or even curiosity, he said: “Let’s have sex. I’ve never screwed anyone with epilepsy before.”
Just goes to show. You SHOULD develop a solid friendship first. Where you’re able to talk to each other about things that are deeper than movies, mutual friends, dinners or sports. When you feel he’s ready and you’re ready. Because, before I spill the beans, I want that person to really know me. And appreciate me as a person. I don’t want to be seen as an epileptic. I want to be accepted and loved as a person who happens to have epilepsy.
I want to confide my feelings. What it’s like for me to have epilepsy. My fears. My hopes. My dreams. I want to be able to share all this with him. (And scare the hell out of him?)
Sure, I knew there would probably be some hesitation on his part before the reality of the fact sunk in. (It’s a little like dropping a bomb.) I accepted the fact he’d have lots of questions. Or at least, I hoped he did — and showed some interest. I also needed time to reassure him. (No. I’m not going to die.) Tell him about epilepsy. Educate him.
Yes, rejection is always a possibility. But so is it with anyone. You don’t have to have epilepsy to be rejected. Although at times when I was having a “pity party,” I considered myself a complete and total “reject.”
I think the key is honesty. If this relationship is going to go any further, he has to tell me honestly what he thinks. For me, that shows respect. Even if he can’t deal with it.
After that it’s easier to get intimate. No more secrets. No more holding back. Except for the little problem of sex…
Dilantin did me no favors. I have to admit, I was a bit numb and dumb. But with patience and perseverance, you can accomplish most things. Even an orgasm!
And like anyone else, I had great love affairs and duds. Them’s the breaks. I had to put on my “big girl panties” and accept that not everyone is going to love you. Even if you love them. Epilepsy or not.
The first boy I ever loved faded in and out of my life for ten years. Wherever I lived (even in Lake Forest, Illinois), he would find me. One minute he wanted to marry me. The next minute he said the sex wasn’t good enough. Geeze. Just make up your mind!
Did I consider ending it? Noooooo. Even when he showed up the first time I was engaged. (I was engaged three times. Somewhat like the “runaway bride,” but I didn’t quite get to that point.)
But there were some wonderful nurturing relationships in which I not only loved but matured emotionally. Those were truly the magic moments. To love and be loved. Unconditionally? No. But hey, you can’t have everything!
Then unexpectedly, love slipped through the door…
I met a guy at work who became a buddy and we started hanging out. You know, lunch and stuff. And he made me laugh till I couldn’t catch my breath.
And then the first time I was in his apartment, he was making drinks and I had a flaming seizure. I figured: “Oh no. Here we go again.”
He was unbelievably caring, gentle and kind. He asked if I was having a seizure and what he could do for me. (It turned out that one of his best friends since second grade had epilepsy).
But, I wouldn’t exactly call our dating days “romantic.”
Our second date was at Arby’s where I instantly spilled a giant root beer on my jeans. The third date, we spent at the Laundromat, because those were the only jeans I had. The next date, we argued about a pair of shoes I was buying. (I hate to admit it, but he was right. They were a piece of crap.)
But we did fun things too. Like go to a street fair, movies, read poems out loud to one another. (We’re both writers.)
And eventually, things evolved. Ironically, without any expectations or preparations. We were simply in love. Good buddies who happened to love each other also. With FULL disclosure. And many seizures, too.
Six weeks later, he called and asked me to marry him. (No, he wasn’t a chicken, I just happened to live 350 miles away. It had been a temporary freelance job.)
I said: “No.” I was terrified. I kept saying “No.” I wouldn’t know a good marriage if it bonked me over the head. I came from a fractured family and every member of my extended family was divorced. Easiest way to not get divorced? Don’t marry.
Finally, it was time to say, “yes,” or “bye-bye.” And you can guess the rest. A year and two days after our first date, we got married.
It’s the real deal…unconditional love. Thirty-three years of it. (With a few bumps in the road along the way.)
I write him love notes every day. Now, isn’t that romantic?
Resources:
http://my.epilepsy.com/epilepsy/social_romantic
http://epilepsy.med.nyu.edu/living-with-epilepsy/epilepsy-and-lifestyle/relationships-epilepsy
http://epilepsy.med.nyu.edu/living-with-epilepsy/epilepsy-and-lifestyle/sex-epilepsyhttp://epilepsy.med.nyu.edu/living-with-epilepsy/epilepsy-and-lifestyle/sex-epilepsy
Tags: acceptance, disappointment, Epilepsy, faith, friendship, honesty, love, personal, romance, sex, trust
17 Comments »
Leave a Reply
About the author
I absolutely couldn’t agree with you more when you say that you don’t want to be seen as an epileptic, but accepted and loved as person who happens to have epilepsy. AMEN!
Comment by Maggie — August 10, 2012 @ 9:22 PM
It took a while for me to get there. Confidence was slow in coming. Especially since my parents treated me like “damaged goods.” How was I to expect that anyone could LOVE me?
Comment by Phylis Feiner Johnson — August 11, 2012 @ 10:55 AM
My parents treated me very well, but I didn’t treat myself well. For a long time I thought of myself as a broken machine. I know better now.
Comment by Maggie — August 11, 2012 @ 11:56 AM
It’s awesome, Great valuable article. I search for this kind of information from many time. And you help me to stop my search. Thanks so much for this.
Comment by Dating and Romance — August 11, 2012 @ 4:14 AM
I guess it’s not something that everyone wants to talk about. Pain. Embarrasement. Shame.
Yet, it’s something we all go through, so why not share?
Comment by Phylis Feiner Johnson — August 11, 2012 @ 11:16 AM
I met my husband through EFA in Atlanta,GA we dated 3 years and we married. He’s controlled except for auras. He had brain surgery that stopped his seizures .
He’s been there for me every time.
Belinda
Comment by Belinda S Brown (@Georgiaalways) — August 11, 2012 @ 5:00 AM
Oh Belinda, you’re so great. I’m sure it wasn’t a picnic for him or YOU to get through the brain surgery and to the other side.
Love and support is what we all need. “In sickness and in health.”
Comment by Phylis Feiner Johnson — August 11, 2012 @ 11:19 AM
Maggie, I hope by now you realize that you are a treasure!
Comment by Phylis Feiner Johnson — August 11, 2012 @ 12:25 PM
Maggie,
thank you and I have realized that there is more to me that I ever realized or my family ever wanted to .My family was always overprotective and can still be.
I don’t want to sound conceited, but I’ve found out I’m smarter I ever thought been told so I was on Dilantin 36 yrs and it did a number on me erasing my memory.
I feel if I can make it in life w refractory E and still look at the world with a positve attitude just about anyone can. Epilepsy not the end of the world and neither is my afib I just have more doctor appointments and watch what I eat and drink.
Belinda
Comment by Belinda S Brown (@Georgiaalways) — August 12, 2012 @ 7:29 AM
Belinda, I wish everyone could see themselves AND life, like you!
Comment by Phylis Feiner Johnson — August 12, 2012 @ 11:31 AM
I don’t feel it’s as much the epilepsy, but the genetic condition I have I have feared that if I were to have any children they would go through the same things I did growing up. Getting bullied, the emotions that causes, feeling different… I don’t want them to have to deal with that.
Guess time will tell if I find Mrs Right or not.
Comment by Travis — August 15, 2012 @ 11:29 AM
Travis, epilepsy is not genetic. See http://epilepsytalk.com/2009/10/22/is-epilepsy-inherited/
Comment by Phylis Feiner Johnson — August 15, 2012 @ 4:53 PM
Travis, here are some stats you might find reassuring:
Less than 2 people out of every 100 (2%) develop epilepsy at some point during their lifetime. The risk for children whose father has epilepsy is only slightly higher. If the mother has epilepsy and the father does not, the risk is still less than 5%. If both parents have epilepsy, the risk is a bit higher. Most children will not inherit epilepsy from a parent, but the chance of inheriting epilepsy is higher for some types.
If you have epilepsy, it is normal for you to be afraid that your children will have epilepsy too. However, a fear that your children will have epilepsy is not enough reason to decide against having any. The risk is low, most children outgrow epilepsy, and most people who have it are able to control their seizures by taking one medicine.
Comment by Phylis Feiner Johnson — August 15, 2012 @ 5:09 PM
I love this – it made my day.
I’m 22 years old and still coming to terms with my epilepsy even though it was diagnosed after an accident four years ago.
I struggle with the opposite sex, but you’ve given me a new hope that it will happen
x x x
Comment by Rachel — August 21, 2012 @ 12:10 PM
Be patient with yourself and embrace your life.
I found that as I grew “more mature” (about three years older than you!) I grew more accepting of myself and in the process, so did others.
I kissed a LOT of frogs. But I finally found my Prince.
Comment by Phylis Feiner Johnson — August 21, 2012 @ 1:26 PM
I simply love your article. When it comes to epilepsy and romance it can be a real challenge. I’ve recently met someone who makes me happy and i can be my normal self. What makes it even more amazing is that after months of chatting he told me that he has epilepsy. Now how cool is that.
Comment by Liza — August 24, 2012 @ 6:55 AM
Wow! That’s unbelievably cool. Goes to show…you just never know.
Comment by Phylis Feiner Johnson — August 24, 2012 @ 9:59 AM