The Social Media Flashlight: How Facebook Demystified XLH

We have another guest post today, this time from Jennifer West. She's the mother of an XLHer, who lives and works in the Wisconsin Northwoods. She's also an antique-collector and nature-lover. 

2009 was one crazy year. Our youngest child was born, and our daughter, Ada, was diagnosed with a spontaneous case of XLH. I was a hormonal mess, crying at the drop of a hat. I don’t think I ate very much, and sleep eluded me often. I lost weight, dropping down to my high school dress size, and I started getting sick. A lot. Tired and sick and confused. That’s my memory of 2009.

When that diagnosis came, after the X-rays and the blood draws and the appointments with first an orthopedic surgeon and then an endocrinologist, we were stunned. Rickets? And XL what? No brochures from the doctor. No resources. We were sent home with a stack of photocopies from a medical journal. We felt like we were walking through a tunnel without a flashlight.

I am a research junkie. Give me a topic, and I’m all over the Internet. So I pored over Google, traipsed through online medical journals, and read and read and read. And then I turned to Facebook.

I tentatively typed “rickets” into the social site’s search engine. And then “XLH.” A few results showed up, and I sent friend requests to anyone I could find who had referenced the condition. And then the notes came. Notes of encouragement. Notes of connection. There were others out there. I saw a glimmer of light. There was a path. I wasn’t the first to walk here.

C.S. Lewis, in his book, The Four Loves, said, “Friendship is born at that moment when one person says to another, ‘What! You too! I thought I was the only one.’”

I’ve always loved that quote, and I think it explains why social media is such an important resource when you’re dealing with a rare condition such as XLH. Social media eliminates geography. It says, “Find me, and I will share with you.” It links us. It pulls us out of that dark hole we’ve sunk into. As a parent, it helped the healing process, gave me a roadmap and encouraged me to move forward. Social media humanized the condition, and showed me that my beautiful daughter wasn’t defined by her disease. She was just that, my beautiful, incredible daughter.

These days, I use social media to update my friends and family on Ada’s appointments. Occasionally, I post a longer note about her overall status. It’s no longer the lifeline it was in the beginning, but it remains a valuable way to connect and share and explain this journey called XLH.

And, friends, because that’s what Lewis says you all are, thanks for letting me know I’m not alone.