By David Cory

Put yourself out there!

Dating is hard. It’s even harder with a rare condition like ectodermal dysplasia. However, through determination, persistence and a handful of optimism, you’ll learn that love is somewhere out there. It’s out there for me, just as it is for you. And for anyone reading this blog who is not diagnosed with ectodermal dysplasia, please understand that love exists for you, too!

But love yourself first

They say two halves make a whole. Perhaps…but not in the dating world. A successful couple consists of two individuals, both independent and whole by themselves, coming together to form a team. Why must we love ourselves before we love another human being?

Fundamentally, if we do not love/accept ourselves (including our ectodermal dysplasia), then various insecurities will slowly seep into our bonds with others. But we can combat these insecurities through the important relationship foundations such as: emotional availability, communication and trust.

  1. Emotional availability means that we understand our feelings while also being able to express and act upon them. If your heart and mind are not ready to open up to another human being, then perhaps you’re not ready yet. Love yourself first. Then offer to love another.
  2. When you’re comfortable, it’s important to communicate with your date/partner that you have a story to tell (your ectodermal dysplasia story). This may be the hardest part of a budding relationship, but it’s a necessary one. It shows that you are direct, open and honest. Any partner can appreciate that.
  3. Trust in him/her to listen to your story. It’s a very unique story and one worth sharing! Truthfully, we cannot know how he or she might react to the intricacies of ectodermal dysplasia, but trust that your story will be received with an open mind and a willingness to learn. Who knows, after your revelation, he/she  could have a story to share, too!

Try, try and try again

For the majority of my 20s, I did not date. If life was a vehicle, then fear took the wheel. As for me? I was locked in the trunk, afraid of rejection. It’s one of my biggest life regrets, but starting in my late 20s, and now at age 30, I am seeing much clearer.

You see, ectodermal dysplasia, itself, will NOT keep you from forming romantic bonds with others. However, failing to try, becoming complacent and bitter, will. Dating is a huge risk, but a risk that must be taken if you wish to find love. Failure is an absolutely necessary component along the path to success. Embrace it! 🙂

The good, the bad and the “what did she just say?”

Good dates: I’ve been on quite a few good dates this year. From hectic speed dating events where the clock is literally ticking… to quiet conversations over a simple cup of tea. From walking along a scenic railtrail to embarrassing myself at karaoke; I’ve tried it all! In fact, one particular first date eventually led to nine!  Unfortunately, though, it did not work out for longer than a couple months but the lessons learned are more valuable than anything. Feeling more prepared than ever, I look forward to my next dating endeavors!

Bad date: This particular date took me 50 minutes away from home, but for a shot at love, that didn’t seem too bad! Having spent a few days text messaging back and forth, we were finally ready for some great in-person conversation!

After our initial hug, we sat down and ordered food and drinks. We began talking and referring back to our text conversations. Roughly 10 minutes in, I felt like I was carrying the entire conversation. The vibe was turning as the tension was mounting. This date was going no where.

Forty-five minutes later, and in much need of a break, I took a stroll to the bathroom. Having returning to my stool, it was her turn for a mini recess.

Upon leaving the bathroom and just before seating herself, she looked at me and said something so funny, I’ll never forget it. “Sorry, I have to go now. I have to buy some lettuce.” LOL!

Well, we politely finished our meals, hugged each other goodbye but never sent another text. I still wonder if she ever got that fresh, crispy lettuce.

What did she say?

Recently, I got a strange message in my inbox while on the popular app “Bumble”. Essentially, it’s a female-friendly app, one in which it requires the woman to send the first message when two people “like” each other. This woman’s first message to me was: “Your eyes, they’re so dark…do you wear makeup?”.

I responded politely by saying “Well, that’s one way to break the ice! And no, this is just how I was born.” She then went on to say “Oh, ok, not a bad thing, I was just curious.”

Quickly enough, I found out that she was quite sheltered, with very few friends and an almost non-existent social life. I felt bad for her, even extending an offer to meet up for a Tuesday trivia night. But she seemed very timid and afraid so we never met.

Always be present in the NOW.

Buddhist teachings will tell you, the most important moment of your life will always be now. Yet, we find the majority of people living in either the past or the future. It’s easy to obsess over the past and perhaps even easier to be hypnotized by the future.

But remaining grounded in the present is where we exist and where we will thrive. When it comes to ectodermal dysplasias and dating, this mindset is helpful: Try not to obsess over bad past dates or unfulfilled relationships, as they have concluded and warrant no further examination. If we continue to replay these scenarios in our minds, then they will continue to torment us. Put them to rest.

Similarly, in respect to the future, we want to avoid creating and envisioning worst-case scenarios. Remember: these worst-case scenarios do not exist. They are fictitious and a product of intense insecurity. Put these hypothetical anxieties to bed.

This is a new day and this a new you! When you are truly present in the “now”, free from both past obsessions and future fears, then you grant others access to your truest, most beautiful form. Speaking of beauty…

…A Beautiful Reality

It is inevitable that our appearances will attract attention. But how we perceive such attention dictates whether or not we are approachable. In the world of dating, we strive to be as approachable as possible; we want people to gravitate toward us as if we were a black hole in outer space. We achieve this by living confidently: keeping our heads high and not tilted toward the ground.

We do it with direct eye contact and a strong handshake. It’s in our walk, in our speech and it must be present in our mindset upon waking up every morning.

Living confidently with a condition like ectodermal dysplasia is simply admirable. If we know our worth and truly love ourselves, we will exude an aura of self-assurance that extends beyond ectodermal dysplasia.

On the contrary, if we appear down and out, others will sense weakness which only magnifies our grief. In this state of mind, we lose the proper gravitational pull and any attention received here is usually out of pity or concern. That’s not the attention we desire.

Our beautiful reality is that we will always stand out from the crowd. Let’s embrace this and use it to our advantage! People may be interested in a platonic (friendly) relationship, or perhaps they want to pursue a romantic relationship with us. Whichever is the case, please understand that ectodermal dysplasia does not and should not define you. Ectodermal dysplasia is merely just a part of you, not the entirety of you.

And so when the time is right, once you have truly begun to love yourself, you will be able to effectively/confidently communicate your ectodermal dysplasia story. If a person does not accept your story for any reason, then they have mistakenly defined you solely by your ectodermal dysplasia. Do not settle: The right person will view ectodermal dysplasia as a beautiful component of you; a single spinning cog in the giant wheel of your life.

Thank you

I would like to thank my friend Matt Peters, who also lives with ectodermal dysplasia and whose resilience and character have inspired me to be stronger. I sincerely appreciate your advice and insight on dating (I’m sure there’s more to come!).

I want to thank my family and friends who have tirelessly listened to all of my dating ups and downs. I can always depend on you! And lastly, thanks to the National Foundation for Ectodermal Dysplasias (NFED) for being a reliable source of assistance to families affected by ectodermal dysplasias. Thank you for supporting me throughout the years and for allowing me to publish this article. I pray it helps even just one person.

–       David Cory is a guest blogger for the NFED. He’s affected by ectodermal dysplasia and lives in New York.

Share Your Story

9 comments on “Dating and Ectodermal Dysplasias”

  1. 1
    EL on September 14, 2018

    I love this article so accurate and well written! Thank you for sharing and inspiring others. You are awesome!

    1. 2
      David on September 23, 2018

      Thanks for the kind words. It was a blast to write! The feedback here has been super positive and I am happy that people are benefitting from the article’s message.

  2. 3
    Sarah on September 19, 2018

    Great advice to the younger generation growing up with Ectodermal Dysplasia. I hope you find that partner some day. I married into Ectodermal Dysplasia as my husband has it and so do our two daughters. Life is an adventure and I’m blessed to have them.

  3. 4
    chanel gumienski on September 19, 2018

    Thank you, David, for this beautifully written letter! Thank you, Matt, for being such a true friend! Ectodermal Dysplasia has been in my family since my maternal Grandpa and has affected 4 generations since. Not once in all that history have I heard such wisdom. You are truly a gift! I plan to share your letter with my grandsons, now 18 and 14. Thank you!

    1. 5
      David on September 23, 2018

      I really appreciate this comment. It struck me very deeply! Yes, please show them the article and continue to encourage them to be confident in themselves!

  4. 6
    Alyssa on September 19, 2018

    This is so great!! Thank you so much for writing this! It’s so hard to be confident sometimes.. but like you said just be yourself and love yourself and you will find love!!

  5. 7
    J on September 19, 2018

    I was afraid to kiss someone for years because of my fake teeth. Through the help of liquid courage, I made out with my first boyfriend, and he had no idea. Not a single guy since has ever noticed. Sharing so that someone who is petrified of talking about it before they are ready doesn’t have to be afraid. That paranoid fear kept me from dating for years. And eventually maybe I’ll meet someone with whom is worth sharing my story along the way who won’t care about my genetic stuff, because chances are, they’ve got something special too 😉

  6. 8
    David on September 23, 2018

    The right partner will admire your confidence. It’ll be an attractive quality they draws them to you.

    Some days will be harder than others. But you’re better equipped than ever before to combat those days. I wish you luck out there. Keep that head high!

  7. 9
    Kevin on September 26, 2018

    Thanks for sharing your story and life experience. Your message resonates with me as being 27 and impacted by ectodermal dysplasia. I have gone through similar experiences as you and appreciate you for sharing your story because it highlights some of the mountains that people impacted by ectodermal dysplasia have to overcome. Like Sarah mentioned in her comment, life is an adventure, and it has its challenges, but we are better because of them.


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