I know I’m a day late, but after much contemplation I decided that I need to address the inception of
the new holiday, World Birth Defects Day. As someone born with a rare birth defect effecting 1 in every 200,000 children born, this day holds very close to my heart. To those who don’t know me well or even those who do know me well, this may come as a surprise to you. At the fear of being treated differently, being probed with questions, it’s not something I tend to share with others. In fact outside of my family members, I can probably count the amount of people who know I was born with a birth defect and what it is on one hand. As a matter of fact, there are some members of my family who don’t know what my rare medical condition is. (You can stop holding your breathe. I’m not going to share what it is in this post either.) And it’s not because I’m ashamed of my condition. I’m just a very private person.
Though it’s a big part of what makes me who I am, I just never thought that my medical history was anyone’s business. So I kept that part of my life private. Besides, there never seems to be a good time to explain to someone that I will have multiple surgeries for the rest of my life, normal functions for everyone else is work for me and that I’m prone to infections due to a rare birth defect that they’ve probably never heard of and won’t understand. That part of my life has always been a complete mystery to others. It’s one of the perks of living with an invisible disease/birth defect. Besides, I was raised by wonderful parents that wanted to me live as normal a life as possible, so I never felt different, sick or disabled. However, not sharing and looking “normal” meant I faced a lot of backlash each time I walked into the disabled stall in the ladies’ bathroom or the times I needed to park in a handicap parking spot when I was pain. And though, I was justified in taking advantage of those things made available for people like me with birth defects, they piercing stares and judgmental comments always made me feel a bit guilty.