Even though I was only eight years old when I was diagnosed with Osteogenesis Imperfecta, I had been around the broken bone block several times and through a hard situation with my family that started because my bones broke without a sufficient explanation for hospital workers. We all emerged out of the other side of everything fine, but it left me a very undemanding person when it came to my healthcare. I knew from an early age (preschool age) that talking about my broken bones was a sensitive issue because it brought up hard, traumatic memories, so I didn’t. When I was diagnosed with OI, I gave it the same pass.
Flash forward to the age of 14 and the last time I saw a specialist before the government stripped away my Medical Card, and I was just beginning to be given some control over my health information. A genetics doctor launched into a discussion of the genetics of OI with me and the possibility of passing it on to future children without asking my mother if it would be okay. She also mentioned the possibility of early testing in order to determine if a fetus had OI. My mother was in the room the whole time, however, and I knew that she thought I would/could never have kids based on conversations she had had with others, so I didn’t ask questions. I wish I would have asked for privacy and asked whatever I wanted. I also wish that when I turned eighteen and was turned loose from insurance altogether that the severance included one last doctor’s visit where I could be briefed on everything in my medical report or at least the things I had questions about.
Going back and piecing that together in retrospect will be incredibly difficult and less accurate than first-hand information would have been from my caretakers. All I know about myself I picked up over-the-counter from overheard conversations between my parents and other people about me or from less-than-rational arguments engaged in before I got married eight years ago. I’m not sure, but I think I was told my spleen would explode and I would die if I got pregnant. It all seemed a bit silly to me and still does.
I almost hate to post about this here because someone I love could read this and might be offended by the way I remember things, but it is emotional triage for me to “speak” these words. I needed to be in control and informed about my life, my body, and my healthcare needs. If I could go back and tell myself anything, it would be to demand a seat at the table as soon as possible and claim my body, my past, and my future because it was and is nobody elses. I don’t share a history of OI with anyone. It is my pain to bear when it comes to that, and I needed to own it from Day 1 instead of partaking solely of the scraps of information that drifted my way.