Why I blog about XLH

We have a guest blogger today, S.G. Hunter. She's a member of the Network who's been blogging about her experience with XLH over the past two years at Banjogrrldiaries.wordpress.com . She describes herself as a 53 year old southern woman with x-linked hypophosphatemia and a sense of humor, and claims that both traits are genetic. 

I invited her to share her blogging experience with the Network, and this is what she had to say:

Someone suggested to me two years ago that I start a blog. I said, “What is that?”  I had heard of blogs, but didn’t know what they were. “A blog,” she answered, “is a personal website where people write about their experiences, thoughts, and feelings.”

I certainly had many emotions and physical changes to process. Once I turned 50, my body decided it had crested “the hill” and started flying down the other side. I began to experience new problems with XLH and reluctantly admitted that it was affecting my quality of life and that I needed the help of doctors.

When I started blogging, I discovered that writing is a great outlet. I had never talked much about my XLH. My brother, until last year, just thought I had arthritis. People who know me just thought I was bowlegged, had a bum knee and was of short stature. I didn’t want to be like some people I’ve known who only talk about their aches and pains. I didn’t want my “identity” to be wrapped up in a label. But at 50, the label “Aging with XLH” became difficult to ignore.

So I talked to my dentist, and then my family doctor, who set me up with a specialist. I began to admit to myself and a few family members that I was encountering additional problems related to XLH. And, as I am sure many of you know, our experiences with the medical profession can by themselves provide enough material to blog about for a lifetime. I personally can’t help but find something ironic or thought-provoking at every medical visit. I believe that’s the way life is, if you’re paying attention.            

Blogging was initially an outlet to express my feelings and thoughts about the physical changes and doctor visits. Then I made connections with other XLH-ers through my blog. When friends discovered I had a blog and wanted to read it, I told them “You’re not part of my ‘target audience’ but you’re welcome to read it. Just remember: I’m not writing for YOU.” I realized then that I wanted to write for other people with XLH. I hoped that my stories could make someone smile or laugh. So my blogging changed from writing for myself to writing for others like me whom I had never met. I’ve made wonderful connections through the blog.

Last year I wrote a post about my homemade limberjacks and offered my limberjack plans for free. I encouraged people who requested the plans to send a donation to the XLH Network. Several people requested the plans, and one person even sent me a copy of the receipt for his XLH Network donation. That made my day.

Blogging, for me, has changed. At first, I wrote for myself. Then I wrote to make connections and encourage others. Now I want to raise awareness too. I hope to continue writing for all of these reasons.