The following TED talk resonates with me in so many ways; some of which I will explain below. In the video, Ash Beckham talks about the difficulty of coming out of the closet. When you hear ‘coming out’, you may think it only applies to gay people, but there are many kinds of closets and many kinds of ‘coming out’ moments. As she says, all a closet is is a hard conversation.
When you keep the truth about yourself a secret, you are essentially holding a grenade.
Writing my story here is a way to help me continue coming out of a closet of my own, and maybe inspire you to come out of yours. While in some ways my EEC is obvious – anyone with eyes in their head can see that I have scars and physical imperfections – in many ways I have spent my life trying to conceal this uniqueness from others. This was especially true throughout my school days, when I would rather have died than try to explain my condition to my classmates. I was ashamed of being different and wanted nothing more than to look ‘normal’ so that people would get to know ME instead of judging me on my appearance. Even as an adult, I sometimes found it difficult to go to new places because I was certain that people were staring at me and judging me the whole time.
It wasn’t until I was in my mid-20’s that I began to expand my circle of friends, and in turn, the scope of my social awareness. One summer evening I was at a cookout hosted by some lesbian friends. I looked around at the group and began thinking about how they had all made decisions to ‘come out’ with their identities. They weren’t ashamed of being different, and they didn’t seem concerned with how people would perceive them. Instead, they knew who they were and how they wanted to live and they went for it. They didn’t hide or pretend to be straight. Some of them weren’t even concerned with whether or not they looked female or male. In that moment I made the correlation to my own identity and how I had chosen to express myself. I knew that I wanted to be more “out” about myself and stop worrying so much about what other people would think. I wanted to be confident in myself the way these women were.
Of course, there is some distance between thinking about doing something and actually doing it. Plus, it’s not like coming out about a health issue is as edgy and cool as saying you’re a lesbian. What I really had in mind was to be able to look someone in the eye and answer their questions without blushing or stuttering and feeling like an undesirable. I wanted to change my attitude from “I know I’m weird. Sorry if it’s freaking you out. I’ll leave now” to “Yes, this is who I am. If you don’t like it, it’s your problem, not mine. I have just as much right to be here as you do.”
In the summer of 2011, several years after I’d had my lesbian-inspired epiphany, I found myself at the NFED Family Conference in St. Louis. I wrote about that experience here. Attending the Conference encouraged me to come out of my shell even further. It was a reminder that there are other people out in the world who are just like me. Other people who have successful careers and families and happy lives. They weren’t hiding their ectodermal dysplasia, but instead were living with it and dealing with it, not letting it hold them back.
Throughout this time, there were a series of experiences and people who inspired me to continue to open up and accept myself, flaws and all. It’s not easy to always be open and confident, but like anything else, the more you keep trying to do it, the easier it gets. I still feel like I have a way to go, and I expect that it might be a lifelong challenge for me. Fortunately I have many inspirational and supportive people in my life, and talking about it definitely helps. Talking to people always puts your own challenges in perspective.
As Ash states in her talk;
Hard is not relative. Hard is hard. We all have hard.
Steps to come out of your closet, or to have a hard conversation:
#1 Be Authentic
#2 Be Direct
#3 Be Unapologetic – Never apologize for speaking the truth
The only story that matters is the one you want to write.
Uncommon Heather 
I wish I was more out of the closet back then like I am now. The older I get the easier, plus like you, the NFED conference gave me even more confidents. I too when I was younger,try to hide my hands and feet the best I could just to keep the staring down as much as possible. I don’t know if this makes sense or not, but I tried to be normal as much as possible….be around normal people do the norm thing…I didn’t want to be around someone different that was talked about or do anything weird just so I wouldn’t be talked about more…does that make sense? Stupid, I know 🙂 Oh,if I knew then what I know now..lol
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I was the same way, Terri. I didn’t want to associate with others who were “different” because I was afraid it would draw more attention to me. I spent my whole life trying to be as normal as possible.
As I get older I am embracing my uniqueness more and more, but I am still not as “out and proud” as I would really like to be. Unfortunately I still worry too much about what other people think of me.
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