DatingGraphicA few weeks ago, I offered to write a post about dating. At the time, I had just written the post about ectodermal dysplasias in the workplace and I was thinking that dating would be another good topic to explore. The truth is, it’s actually kind of hard to determine how much ectodermal dysplasias is to blame for things being difficult, or whether you’d have a hard time with these things even if you didn’t have a genetic disorder. A lot of people have challenges with dating and relationships, whether they have birth defects or not. I don’t claim to be an expert in dating or in relationships, so I will just tell a bit of my story and share some of the things I’ve observed along the way.

Self Image

A lot of girls and women struggle with their self image. From a young age we’re taught (by media and by our peers) that our worth is derived from our looks, and that being pretty and delicate and feminine is ideal. We learn to criticize ourselves harshly. My stomach is flabby. My thighs are so gross. I hate my hair. We overhear other women complaining about their bodies and we compare ourselves to them, always thinking of what is imperfect and what needs to be fixed.

Growing up, my two closest friends were very pretty. They easily attracted the attention of boys and they thrived on it. I often felt like the ugly duckling around them, especially when they would critique their own appearances. One time that really stands out is when a friend was admiring herself in the mirror and said that she thought her eyes were her best feature. I asked her what she thought was my best feature. She thoughtfully studied me for a minute before saying, “You have nice ears!”

I can laugh about that exchange now, but for a long time I thought that maybe my ears really were the most attractive part of my head. Over time, and with effort, my self image improved immensely. Getting dental implants was a big help. Figuring out how to manage my unruly hair was another. But it wasn’t all superficial things. I stopped reading beauty and gossip magazines. I started paying attention to the fact that beauty is not merely what is on the surface. I saw how beauty can radiate out from within a person, and even the most physically beautiful people can appear ugly if what they project from inside is unpleasant.

The Teenage Years

Most of my teenage years were spent dreaming about having a boyfriend. Perhaps a victim of the Disney portrayal of romance, I expected that a boy would just see me, be smitten and would ask me to be his girlfriend. That’s how it worked in the movies, right? I had plenty of crushes at school, but I was too shy and nervous to interact with any of them. In middle and high school, I was really self conscious about myself. It wasn’t even just my EEC-related differences that I worried about. I worried about how my butt looked in my jeans. I worried about being flat-chested. I worried about my hair being the right style, and wearing the right kind of clothes, and having the right backpack. I guess a lot of high school kids worry about those things too. It all seems so silly in hindsight.

While I did have guy friends throughout high school, it wasn’t until I got to college that I finally had a boyfriend. By then I’d almost given up hope of ever finding a guy (dramatic, right?). Josh was a guy in my church youth circle that I’d known for years. We had a lot of friends in common and I’d always thought he was attractive (my friends and I called him ‘Travolta’ behind his back for his resemblance to a young John Travolta). He called me one night after we’d spent a lot of time together at a youth weekend and asked if I wanted to be his girlfriend. My heart was in my throat. It was the first time a guy had admitted to liking me, and the first time a guy had genuinely wanted to date me. Of course I said yes, and just about died of the thrill of it.

Because I’d known Josh as a friend before we started dating, he was already familiar with my hands and feet, and he knew that I was going through a lot of dental work. He was a pre-med student so he was really interested in everything about me. He even went with me to a couple of my dentist appointments. My EEC was not a deterrent to him at all. He loved my long blonde hair and he said that he was so used to holding my little hands that it would be weird for him to hold hands with someone who had all her fingers. The first time we kissed, I was so nervous that he would be able to tell that my teeth weren’t real. I buried my head in his chest to keep him from getting near my mouth. But it turned out that liked the way I kissed and he didn’t care that I didn’t have real teeth. He helped me overcome a lot of my insecurities about my appearance. He told me that I was gorgeous inside and out. He really opened up my eyes to my unique beauty and helped me accept myself as I was.

Eventually, Josh and I broke up, but our relationship did a lot to boost my confidence. I was actually excited to go out and date other guys because I was so much more confident than before.

Twenty-something

Of course there are certain things about EEC that can’t be hidden. My cleft lip scars and my ectrodactyly are pretty obvious. It wasn’t something I ever felt like I should announce or try to explain to someone that I just met. Having a physical difference is sometimes a blessing because it weeds out the superficial people right away.

I had a couple of occasions where things were going well on a first date, and then after the date or encounter ended, the guy would contact me online (these were the days of AIM), and ask me what had happened to my lip or my hands. Had I been in an accident? One guy even told me that he didn’t see us working out, but that I shouldn’t feel bad because it wasn’t because of my harelip. (He got an earful for that one!)

Another dating situation gone awkward was the time I met up with guy who I knew through work. He took me mini-golfing on a hot summer afternoon. I didn’t think it would be a big deal, but by then I’d grown used to sitting in an air-conditioned office all day at work, and had forgotten what a sunny, midsummer afternoon could do to me. By the end of the golf game, I was beet red and shaky on my feet. He took me to a restaurant where I cooled off and regained my composure, and it never came up again while we dated.

For the most part, I’d say that my dating experiences were typical. Sometimes there was simply no chemistry between me and a guy, but I never thought it was because of my EEC. If it was, guys were polite enough not to mention it. I did find that sometimes guys would assume I had really low self confidence and that I’d be more willing to do things that other girls wouldn’t have. An example was a guy from work who started hitting on me and kept asking me to meet up with him at a hotel room. No dinner dates or romance, just meet me at a hotel. Yeah right, buddy!

The Long-Term Deal

Dave won me over with a chocolate frosty on my birthday. We worked at the same company, though we didn’t see much of each other. On my birthday, he called me and told me he had a present for me. I went down to the shipping office and talked to him while he ate his lunch and I ate the frosty. “We should go out sometime,” he said.

One afternoon after we’d only been on a few dates, I mentioned that my feet were sore. Dave offered to massage them for me, but I declined. He hadn’t seem my feet yet and I wasn’t ready to reveal them. He sensed my hesitation and assured me that it was okay, and he didn’t care if my feet were different. He pulled off my socks and gave me a foot rub, and well, if the chocolate frosty hadn’t been enough, this was certainly the icing on the cake.

In the beginning of our relationship, I kept a lot of my maintenance routine secret from Dave. All of my dental-cleaning apparatuses were kept hidden away. I waited until the lights were out before I put ointment in my eyes at night. Over time, more and more things came up in conversation and I became more relaxed about him knowing all my little secrets. It wasn’t so much that I was ashamed of these things, just that I didn’t want him to know just how much work it took to make myself presentable. But a relationship is a partnership, and having him be aware of all of my little issues is very helpful. Having his understanding of my needs makes my life a lot less stressful than having to hide everything from him.

My ectodermal dysplasia has affected our relationship in some ways. Dave spent part of his youth growing up in Miami. He loves hot weather and going to the beach. I’ve told him that I’d like to go on a tropical vacation, but he worries that I will be miserable in the heat. Sometimes I think he worries more about how I will handle the heat than I do. But then again, he is the one who suffers my extreme grumpiness when I do get overheated or get a headache.

Some Advice

If I could go back in time and talk to my teenage self, I would tell her to relax about finding a boyfriend. I know it’s hard at the time, especially if it seems like everyone else is dating or in long-term relationships. I would tell myself that I was beautiful and funny and nice, and that people liked me. I would suggest that I be a little more assertive and not be so afraid of being rejected. All those boys I had crushes on at school and never talked to? Well… what harm would have come if I’d just made an effort to get to know any of them? Or, to really go out on a limb – what if I’d actually asked one of them to go out sometime? I know the concept would have blown my mind at the time, but maybe it’s not too late for you, dear reader.

Relax. High school is not your whole life. I know it feels like it when you’re there, but before you know it, it will be history. Grab the opportunities that come your way. Get involved in activities or clubs that interest you – that’s where you’ll meet people who you can really connect with. Having good friends does a lot to boost your confidence and helps increase the chances of finding a date.

Being happy with yourself is really important. No matter who you date now, or who you end up married to – you have to live with yourself every day for the rest of your life. So take the time to figure out what you like (and don’t like) and surround yourself with people who have similar goals and interests. Don’t let negative people drag you down. Don’t change yourself to fit in with people. Love yourself and be proud of your talents. After all, there is no one else quite like you.

Share Your Story

9 comments on “Ectodermal Dysplasias and Relationships”

  1. 1
    Lisa on September 18, 2014

    Beautiful, beautiful article! I hope it reaches many people who could benefit from this wonderful, heartfelt advice. Thank you for writing it!

    Lisa in Canada

    1. 2
      _Calluna_ on September 19, 2014

      Thank you, Lisa! It was a tough one to write. I’m glad you like it. 🙂

  2. 3
    Morgan on September 19, 2014

    Great article! Very well written! I also agonized as a teenager about whether my HED would keep me single. You are right that everyone has insecurities. Once I let go of mine, I fell in love. We have a son with HED now and both my husband and I really don’t see any difference in him that should ever hold him back. Everyone has something that they struggle with in their life. My son and I have HED, and yes, it does come with its share of hardships, but who am I to say that someone who is born without a genetic condition has it any easier. All people suffer from something in their life.
    I have lots of friends who were born without any genetic difference who are single and lonely. I hope this article gives teens and adults with ecodermal dysplasias hope that they too can find someone who loves them. So much about what attracts others to us is our personality and life choices, not stereotypical beauty ideals. Thanks for writing this!

  3. 4
    EEC Chick is One! | EEC Chick on September 27, 2014

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  5. 6
    Alan Hood on December 12, 2017

    Ectodermal Dysplasia, my experience.
    When I was a child I had a “pronounced forehead” and had all the caveman jokes “do you live in a cave?” “do you have a pet dinosaur?” etc. People ‘accidentally ‘ bumped into me, “OH, I didn’t see you there?” Teachers told my parents (while I was present and able to hear them) “ he doesn’t LOOK like he’d be able to take the exams to go to secondary school, so I was in put in the lowest group / section at secondary school.
    At twenty years of age I tried to join the armed forces, I actually got in, got through the physical/ mental tests, only to be medically discharged within months? No reason was given, my parents tried over and over to try and find out the reason. Each time I tried get a job, my prospective employer could find out through my medical records, but my parents or me couldn’t get to know, we were denied access.
    It has taken forty years to find out, because a phrase/name kept being spoken each time I went in hospital, no one would tell me what it was, so I looked it up on the internet! Hereditary Ectodermal Dysplasia was easily searched and found last year. I am now in my late 60’s, my hobby was photography, I achieved awards for my photography, and still get comments “ Did you take them?”
    Like I was lying?
    How do I feel about such comments/ jibes? Over the years? They are not worth even thinking about!

  6. 7
    Alan Hood on December 12, 2017

    Ectodermal Dysplasia, my experience.
    When I was a child I had a “pronounced forehead” and had all the caveman jokes “do you live in a cave?” “do you have a pet dinosaur?” etc. People ‘accidentally ‘ bumped into me, “OH, I didn’t see you there?” Teachers told my parents (while I was present and able to hear them) “ he doesn’t LOOK like he’d be able to take the exams to go to secondary school, so I was in put in the lowest group / section at secondary school.
    At twenty years of age I tried to join the armed forces, I actually got in, got through the physical/ mental tests, only to be medically discharged? No reason was given, my parents tried over and over to try and find out the reason. Each time I tried get a job, my prospective employer could find out through my medical records, but my parents or me couldn’t get to know, we were denied access.
    It has taken forty years to find out, because a phrase/name kept being spoken each time I went in hospital, no one would tell me what it was, so I looked it up on the internet! Hereditary Ectodermal Dysplasia was easily searched and found last year. I am now in my late 60’s, my hobby was photography, I achieved awards for my photography, and still get comments “ Did you take them?”
    Like I was lying?
    How do I feel about such comments/ jibes? Over the years? They are not worth even thinking about!

  7. 8
    Cindy on May 10, 2018

    My grandson has ed. He is 21. Is there a dating site that maybe he could meet a girl with ed too? He’s a college graduate, has his own place. Smart, gentle and neat. I thought maybe there might be someone wanting to find the right one in their life too. He doesn’t know I’m asking. I pray no one is offended by me asking.

    1. 9
      Jodi Edgar Reinhardt on May 14, 2018

      Hi, Cindy. We are not aware of any dating site specifically for people affected by ectodermal dysplasia. Your grandson sounds like a wonderful young man. We are not offended! Take care, Jodi, NFED Director, Marketing and Communications

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