Some people that I know in the real world, will know this already. Some of you lovely followers will read this, others won’t bother and it won’t affect them in the slightest. And that’s ok, as far as I’m concerned. But, I thought it was time to reveal a little more about me, and maybe learn something from the telling.
So, I suffer from a condition called XLH. Suffer is the wrong word actually, because I don’t really suffer with the condition. Better to say that I have XLH. It is a metabolic condition which affects my kidney functions. No, I don’t require dialysis treatment. What happens is, that my kidneys cannot process vitamin D and phosphates into calcium. Calcium is one of the essential building blocks for healthy bones, therefore, my bones are naturally softer than a “normal” person. When I was a kid, this meant that my legs bent, or bowed, to use the correct technical term, under my growing weight.
When I was 3 and 4 years old, I had surgery to correct the leg bowing. Thankfully, I don’t actually remember that time, nor the pain. The only memory I have is of being in a full body cast, and my dad carrying me downstairs so that I could watch TV during the day. Unfortunately, the medication I was on to manage the condition wasn’t strong enough, so within a few years, my legs had bowed again. Which meant that, when I was a teenager, I had to have yet more surgery to correct the bowing and give me a “normal” appearance.
One of the main symptoms, or characteristics of XLH sufferers, is that they are of short stature, i.e. significantly shorter than other people who don’t have the condition. I ended up being 5’1, which is considered to be relatively tall for people with the condition. Some people end up being well under 5’0. This was difficult for me growing up, as most of my friends are several inches taller than me. Yes, I got bullied when I was younger, in primary school, before the second bout of surgeries. And I was able to get over it after some time, but it left me a bitter, and defensive/aggressive person. Understandable, you might think, but for a time, I was a very unpleasant man.
Nowadays, I am more comfortable with myself, and have accepted everything. I am much more tolerant, and infinitely more pleasant! However, one side effect from the surgeries is that my left leg is exactly one inch longer than my right leg. This not only plays havoc with my wardrobe (lol but true!), but as I didn’t really cop on to it for a number of years, it has left me with a nasty limp, and quite often, some very debilitating back pain. I have a special shoe to help level my hips and allow my back to settle down and try to heal, but these things are very expensive, and not every shoe can be modified to suit. So, basically, I have to go on as I am, until I can either no longer walk, or can afford more surgery, or some much better shoes.
But, this leads to another problem. And something that also hurts to my very core. My physicality is very noticeable. And quite often, at least when I lived in Ireland, I would hear this little voice behind me in the supermarket saying “Mommy, look at that funny small man and the way he walks.” While I can understand a child remarking about something or someone that is different from the norm, I cannot understand why a parent simply shushes the child, who then goes on to complain or make even louder comments, because he or she thinks that Mommy hasn’t heard their comment.
Having this condition, and living with it and the side effects are one thing. But having to deal with other people’s ignorance is something completely different. And I know that I am not alone in this. I am not the only person to ever have suffered with a condition and be ridiculed or made an example of by “normal” people who simply don’t understand your condition. Every day of the week, I have seen or heard of people who are afflicted with some far more debilitating illnesses and conditions than mine. People who often display no outward differences that would give away the fact of their condition. For example, you cannot see most cancers. Lupus is not readily identifiable from a first glance. Nor is depression, certain other mental illnesses, and indeed other medical conditions.
Yes, I am different from you, and your children. I implore any of you that are parents to EDUCATE your children on how to behave around “different” people. Don’t shush them just because YOU are embarrassed by their statement. Tell them that the person they see is different, but that it is ok to be different. Tell them that other people have different illnesses that we can’t see. Tell them that this is ok too, because it is the way of the world. In any case, why the hell are YOU getting embarrassed about someone else’s physical appearance or condition? Or is it just that you are shocked that your little darling child has spoken out? Get over it and educate your child, but don’t punish them. They haven’t done anything wrong, as they are just too young to understand the meaning of different. And that is where YOU, as a parent, SHOULD be stepping in.
We are not monsters or aliens or anything sinister at all. We are human beings, just like you, only slightly different. And we have the same rights as you do. So, don’t be embarrassed or shocked. Celebrate differences, rejoice that we are not all born equal. For that is our greatest strength.
