I grew up in the sixties, which for all its social progress was still an era where disability or disease came with a social stigma. It was something we did not talk about publicly, so having XLH was a source of embarrassment and sometimes even shame for me. When my classmates asked me why I was absent one day a month (to go to medical appointments) I would make up a story. Even though my disease was obvious on the outside, I wasn’t comfortable sharing details with anyone outside a close circle of friends and family.
In some ways, ignoring my challenges made me strive to succeed despite them, which was a positive thing. In other ways, it kept me disconnected and reluctant to seek out others in the same situation.
Then the Internet happened, and one of the first things I did was search for what used to be called Vitamin D Resistant Rickets. Eventually I discovered the XLH Network. Here was this vast resource of medical information, personal stories, and opportunities for engaging with others. I was fascinated and mortified at the same time. Still stuck in that embarrassment from my childhood, I would pop on and off over the years whenever I needed information or had a question, but I didn’t stick around.
It wasn’t until 2015 that I finally had enough nerve to attend an “XLH Day” family conference. To say I was terrified is putting it mildly. I must have driven around the block at least 5 times before I had enough courage to go in. I was 54 at the time and had never met a person with my condition. That moment when I walked in and saw all these people that looked like me was so emotional and so validating. I don’t have the words to describe what it felt like. I don’t think anyone that hasn’t been in that situation could fully understand. For the first time in my life, the people around me weren’t staring at me, trying to figure out why I was so short or why I walked the way I do. They just accepted me.
What I can say is that day literally changed my life. I made some friends, I started volunteering for the Network, eventually landed on the Board of Directors, and now I am the Executive Director, getting ready to launch our first virtual family conference: XLH Week 2020.
So to anyone out there that might be feeling shy about reaching out to the Network…take it from me. It is NEVER too late to find your community!
This piece is a guest post contributed by Susan Faitos, Executive Director, XLH Network.