Choosing a Career Path with Ectodermal Dysplasias in Mind

I’m not very old, but already I’ve experienced a variety of career fields. From an early age I loved to draw, build, create, imagine. I didn’t consciously think about what I wanted to be when I grew up. In fact, that was one of those questions I struggled to answer. While other kids said they wanted to be a ballerina, a fireman or a teacher, I would shrug my shoulders and say “I don’t know!”  I pursued activities that were related to my interests, so I took a lot of art and music and enjoyed spending time out in the woods exploring nature.

As high school drew to a close and I had to figure out what I wanted to do in college, I decided I wanted to be a children’s book author and illustrator. Reading and enjoying the artwork in children’s books had been an important part of my childhood. As a teenager, I hadn’t lost that childlike sense of wonder about the world and the love to explore new places and concepts through books. After a few semesters as an art major, I dropped out of college. Not because it was hard or challenging, but because it was neither of those.  I wanted to push myself out of my comfort zone and see what else was out there.

Over the next decade, I worked as a customer service rep and then an account manager at a dental supply manufacturer (oh, the irony), I worked in a shipping warehouse (fun!), I worked at a flower farm (exhausting) and at an insurance company (yawn!). I went back to school and got a bachelor of science in landscape architecture, and then continued on to become a certified master gardener. I volunteered at a youth prison where they had a vegetable garden. Never once did I consider that my EEC might limit me in any of those pursuits, although the heat did eventually become a deterrent to working outdoors full-time.

My current career field is in marketing. Most days are spent in a temperature-controlled office environment, which is ideal. I used to think that working in an office environment would be horribly boring and soul-crushing, and believe me, I’ve worked in some offices where that is true. Fortunately, the place I work now is not like that at all. Since one of my duties is to help with organizing and hosting events, I get to spend a lot of time away from my desk. I even get to travel!

Your Syndrome and Interviewing

For much of my life, I pretended that I did not even have EEC, and that no one else would notice it. I treated my hands and my cleft scars as two separate issues. I figured that most people knew what a cleft lip and palate was, and so I didn’t feel that it needed any explanation. My hands were easily concealed under a table during interviews and so I told myself that people didn’t even notice them.

Once, I was applying for an internship, and after showing my portfolio to the interviewer, she shook her head in amazement. “Your drawings are so beautiful, and you’re… challenged!”, she said, eyeing my hands. It opened up an opportunity to discuss my hands, but I was irritated that she’d noticed. Instead of using the moment to educate her, I responded that I didn’t know how people with five fingers managed to draw or write with all those extra fingers.

Many years later, after some attitude adjustments, my hands came up again in an interview. This time, it was I who brought them up and talked about how I didn’t let little “challenges” hold me back in life. I got the job, hands down.

Discussing Your Syndrome with Your Supervisor or Co-workers

At no time in my professional career have I sat down with any of my bosses and laid it all out on the table. Most of my supervisors had no idea I had any kind of syndrome – just that I had a cleft lip and palate and some hand defects.

As I mentioned before, when I was younger, I was pretty defensive if anyone suggested I might not be able to do something on account of my hands or for any other reason. I did not tell anyone that I was sensitive to heat, or that I didn’t like being out in the sun. Instead, I would suffer through situations, gritting my teeth and telling myself I just needed to be strong. I didn’t want to give anyone reason to think I was weak.

The last time I worked at a job that involved being outdoors, I did explain to my boss that I was struggling with the heat and the sun. At the time I was still not fully comfortable discussing EEC, so I didn’t give him the whole story, but just enough so that he would understand my limits. He did work with me to arrange my schedule in a way that kept me out of the sun at the hottest parts of the day.

In the last several years I have become more open about my syndrome. A lot of my co-workers are Facebook friends with me and have seen photos of me with my NFED Conference friends. This has spurred some discussion with people who were curious to know what the NFED was and why I was involved. Depending on the level of trust I have with the person, I share what I feel comfortable sharing. All of the interaction I’ve had with co-workers asking about my syndrome has been positive. I don’t go around flaunting my differences, but I am not ashamed or shy about discussing them either.

My current supervisor is aware that I have hearing loss, though this is not something that is usually apparent in my day-to-day work. Since most of our work is indoors in air-conditioning, I do not worry about overheating.

Daily Reminders 

At first glance, I don’t think that EEC affects my work day. The reality is, that it is as much a part of who I am as say, being a woman. There are things that I experience each  day that are related to my syndrome, but I am so used to them that they often go without notice. For example, my nose runs a lot. I always keep a tissue box on my desk and bring a clean tissue whenever I have to step away from my desk. I am also self conscious about getting food stuck in my (artificial) teeth, so I keep a small mirror at my desk and in my purse so I can check my teeth whenever I eat. I carry disposable toothpicks and floss so I can clean around my implants during the day. It’s no fun having a pesky piece of spinach wrapped around an implant post.

My eyes are probably the biggest daily battle. In one day my eyes can go from being dry and scratchy to excessively teary to painfully dry or just plain painful. If I am diligent about putting my eye drops in, I can ward off some of the discomfort. However, putting in eye drops can be a hassle in itself. If you’ve ever tried to read text on a computer screen with blurry eyes, you know what I mean. By the end of a long day at work, my eyeballs are usually the most tired part of me.

Another aspect of EEC that arises somewhat regularly is the handshake. It’s not every day that I meet someone new and shake their hand, but when I do, it’s interesting to observe their reactions. Most people either don’t notice, (or they are really good at pretending they don’t notice), but occasionally people will do a double-take or a discreet glance to see what’s going on down there. The worst was one woman who literally bent her head forward to stare, open-mouthed at my hands our hands parted. It was so ridiculous I almost laughed out loud.

Overall, I would say that yes, there are aspects of my syndrome that can be annoying and some days even a deterrent to having a productive work day. Fortunately I am able to manage most of my “issues” and they are just an accepted part of my daily routine. I am really thankful for my current job, where the air-conditioning flows freely and I have a flexible schedule that allows me to go to the various doctor and dentist appointments that I need. (That’s another aspect of EEC – lots of specialist appointments!)

In Conclusion

Of the people I know who have EEC, I don’t anyone who has let their syndrome prevent them from pursuing their dreams. We can write, type, wear gloves (maybe a little differently than you do), sew, use scissors, etc. Life might not work out exactly as you anticipate, but with an open mind and creative thinking, you can be successful in whatever it is you want to do. Shoot for the moon!

Share Your Story

4 comments on “Ectodermal Dysplasias in the Workplace”

  1. 1
    Guadalupe Velarde on August 22, 2014

    I would like to thank you for sharing your experience with EEC. This past conference was our first and seeing young people like you getting what they want in life is very encouraging. My nephew has HED and sometimes I am worry how teenage and adult life will be for him. But hearing strong people like you just assure me that he will great. So thank you

    1. 2
      _Calluna_ on August 23, 2014

      Hi Guadalupe,
      Thank you for your positive words. I am happy to share my story and hope that it helps others. Ectodermal dysplasia can make things difficult, but I think it also helps us become stronger and more empathetic people. 🙂 I am sure your nephew will do just fine.
      Kind regards,

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