There’s this quote in Tender Points by Amy Berkowitz that reads, “To google yellow wallpaper and find yellow wallpaper. Swatches of it.” I think that two years ago this quote wouldn’t have resonated with me the way it does now. I would have seen no greater meaning. What does yellow wallpaper have to do with anything anyway? But now… Now it hits me like a sack of bricks. Now looking something up on the internet and finding results, in abundance, seems like a luxury. But this is the reality of living with rare disease.
I remember sitting in a coffee shop after the appointment. I was sipping on a cup of tea, hoping that diagnosis I’d just received would be the one. I’ve had plenty of diagnosis’ in the year and a half I’d been sick, but each was eventually ruled out when they could no longer explain the disease that was rampaging through my exhausted body. People around me were growing more and more confused with my ever-changing list of ailments and ultimately, less than understanding. Anyways, it was during this time that I’d gotten a text from one of my fellow rare disease fighters. It read, “Dude. I could only find one credible article about your disease online.”
Let that sink in.
There is an entire community of rare disease fighters out there and they honestly amaze me in almost every way. Strength, dignity, grace and courage in the face of diseases that ravage bodies and lives with dismal funding, few treatment options, and little or no hope for a cure. THEY are why today, Rare Disease Day, is so important. We exist in a world where the world knows little about the battles we face on a daily basis. Even doctors and researchers and medicine as a whole know so little when it comes to rare disease. This lack of awareness and funding only deepens the hole we are seemingly trapped in. We do have one thing though… Hope. Each year I get the pleasure of watching this community fight for themselves, for each other, for awareness, for help. They never give up in their efforts to change the way the world views rare disease so that no other will ever have to wait years for a diagnosis or be turned away from doctors. We strive to end the ignorance and make progress.
These are only a few, sloppy reasons why this day needs to be shared by everyone. I hope you’ll join me and #careaboutrare by showing your support for #RDD2016.