Those who have known me for a while know that I am almost always injured in some way, shape or form, and it’s not just because I am the biggest klutz ever. I was born with a very rare bone condition called Osteogenesis Imperfecta (OI) which in layman’s terms is brittle bones disease. To date, I have fractured bones around 100 times, torn many ligaments and dislocated joints on multiple occasions. However, when I am not in casts, splints, slings, on crutches or in a wheelchair, I look like anyone else, which is why OI is often called an invisible disease, because at first glance you wouldn’t know anything was wrong. I have grown a lot in the past few years and have come to accept my condition and all of the issues that come with it.
I have to be careful all the time. I never know what will cause a fracture—simple twist of the ankle, catching something wrong, stubbing my toe... the list goes on. There have been over a dozen times that I have woken up with fractures. My bones just broke while I was asleep. I used to be super active, I was a cheerleader for 10 years and also did power tumbling. Being forced to quit was one of the hardest things I’ve ever had to do, and I still miss it so much. Quitting was necessary for my health though, as there is just no way my body could have handled the continued stresses of such a high impact sport.
I also deal with constant pain. I have no memory where I wasn’t in pain. Some days the pain is worse than others. There are days where my pain is completely manageable, and with just a little distraction I can almost forget about it all together and go through my day like anyone else. However, there are some days that I am in so much pain it is hard to get up in the morning. I have to force myself to get out of bed and to keep moving throughout the day. There have been days when the pain has been so bad I have missed classes and school because it would have just been too much for me to handle. And no matter what my pain is like, I dread getting out of bed every single morning. Not because I am not a morning person, I really love the mornings, but those first few steps each morning are the most painful.
Living with such a rare conditions also has come with social pains as well. I have always been the klutz, the gimp or cripple. I mean, I am very clumsy which doesn’t help my condition any, but once I got the nickname it stuck. I laugh about it now but when I was little it used to bother me. When I got to high school it got a lot worse. I always knew that kids could be mean but I didn’t realize how mean until I was wheelchair bound my sophomore year. My classmates called me all kinds of names and many never even bothered to learn my actual name. People questioned whether or not I was actually hurt or just making it up for attention. They would “joke” about pushing me down the stairs or talk about how I would be trapped in the building if there was a fire and never make it out. I lost a lot of friends in high school because I didn’t have the energy to go do things with them and they didn’t just understand. But the ones that stuck around are incredible. They helped me so much when I was at my lowest. My family was also very supportive and I am very grateful for that.
Having a rare condition like this sure makes life interesting. I have learned to deal with a lot: mean people, intense and constant pain, adjusting to different casts, splints, crutches or braces. Living with an invisible condition hasn’t been easy, but it’s my life and I am going to make the most of it.
