The maturity of XLH patients

Today's guest post is by Network member, Andrew Shortall. He was diagnosed with XLH at age two, and has become a self-taught chef, wine business person and a writer, with aspirations to become a novelist. You may remember him from a few months ago, when he shared his experience with some confusion over whether a symptom was XLH-related or not.

"Andrew, you’re so serious."

I've heard that phrase most of my life, from many different people. They seem to think I never have any fun, but I've had plenty of fun throughout my 38 years on this planet, and some amazing experiences. I've driven a single-seat race car on a race track, I've stood next to a Formula 1 race car as they fired up the massive V10 engine, and I've had a flying lesson in a helicopter.

And yet, I’m labeled a "serious" man.

I've come to realize that being serious is actually a different label for maturity. Growing up with XLH has left me with this perceived maturity. And I think this is something that is quite common with anyone diagnosed with a chronic medical condition, who has to go through life dealing with all the issues it throws at you. A child with a chronic illness really does have to grow up quickly. In my case, I underwent multiple surgeries, spent weeks at a time in hospitals and visited my endocrinologist as often as twelve times a year.

This level of maturity, at least in me, has had a knock-on effect on how I deal with the various traumas life sends my way, too. I've lost friends and family to illnesses, I've been hired and fired from jobs, I've dealt with the end of a relationship, and most recently, I've watched my much loved doggie pal’s health deteriorate until she finally passed on.

To look at me, you might think that I was uncaring about all these things. Nothing could be further from the truth. At funerals, I’m deeply cut up inside. When my dog passed, I cried in private. When my now ex-girlfriend ended our relationship, I bounced between feelings of anger, hurt and sadness for a while. But eventually my "maturity" kicked into high gear. My coping mechanism asserted itself, just as it always had during every physical trauma I've been through.

People have asked me how I manage to cope so well, and wonder why I’m not more visibly upset when something bad happens. I think my XLH has conditioned me to be this way. It really is no bad thing, because when someone I care about suffers a trauma, I can be the rock they need to lean on. As someone who has been leaning on other people his whole life, it's really nice to be able to return the favour!