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.
On more than one occasion, I recall walking out the disabled stall only to find an elderly woman in a wheel chair waiting for me to get out. Those judgmental eyes upon her seeing that I was indeed capable of walking and didn’t look sick were burned into my heart. And lets not forget the day, I was in horrible pain from an infection and pulled into a handicap spot at the mall. Not only did I deal with scathing stares from the people in the disabled spot next me, but I upon walking back to my car I was greeted with a note on my windshield that said, “You don’t look sick to me. Park somewhere else.” Initially, that note felt like a dagger to my heart. It’s bad enough feeling like you don’t fit in with the other “normal” people in the world without rare birth defects, but it’s worse when other people with medical conditions ostracize you because you don’t look the part. But I contained myself because I had nothing to be ashamed about.
Of course, I couldn’t let those closeminded people have the last word. Instead of letting them think they won, I simply used the same piece of paper they left on my car to give them some wisdom. On the note I wrote, “Thank you for the compliment. I’m so glad I don’t look sick to you. I was actually born with a rare birth defect. Next time you choose to judge someone, remind yourself that not all medical conditions are visible.”
Though I’m hopeful, that my note may have opened the minds of those wrongly judgmental people, I only hope that others around the world lean towards being a bit more sensitive to the invisible diseases and unknown birth defects others may have. So even though World Birth Defects Day has passed, I ask you to be open to those around you with visible and invisible difference today and everyday. And should your heart be open to it, consider donating to a cause recognizing the plight of people with birth defects or those living with birth defects. A few of my favorites are March of Dimes, Spina Bifida Association, the Association for the Bladder Exstrophy Community, and Rare Disease Day.
To others like me, I wish you all a Happy Belated World Birth Defects Day!
Do you have a birth defect or do you know anyone living with a birth defect? Do you think you are open mined when it comes to those with invisible diseases?
TERRIfic Quip: Instead of being ashamed of what you’ve been through, be proud of what you’ve overcome.