Surprise! It's Rare Disease Day!
Last updated: February 2023
It's that special day of the year again. You know the one. The day when all of your friends bestow many a gift and regale you with all the knowledge they've gained about your condition over the previous year.
As the person living with a rare disease, you act surprised as friendly faces magically appear at a restaurant to watch you eat a meal you won't have to pay for. Some years they even jump out from behind lampshades and couches in your own home...
SURPRISE! It's Rare Disease Day!
Okay, so maybe that's more of a fantasy than a reality. A fantasy that would surely transform into a nightmare when people start to catch on that you aren't really surprised and the number of guests begins to dwindle. The ol' "R-to-the-double-D," as it would come to be known, would be a minefield of lofty expectations sprinkled with the barbed wire of harsh realities.
Heck, I don't even know all of the intricacies of hemophilia myself. By the time I get caught up (Narrator: "He never gets caught up.”) there are new discoveries, and I'm playing catch-up all over again. Surprise Rare Disease Day celebrations would be hella awkward for cats like me. Within a few years, a lot of my friends would know more about hemophilia than I did, and I'd resent them for that.
What I appreciate about Rare Disease Day
I jest, of course. Still, the kind of Rare Disease Day framework imagined above would be especially problematic if you're the kind of person who prefers as little attention as possible centered around you and/or the medical condition you are living with. From years of personal experience, I certainly know how that feels. Maybe you wish there wasn't a Rare Disease Day at all?
Me? I am happy that it's here. Whether direct or indirect, all of our lives are touched by medical adversity. If your life hasn't, then that day will arrive at some point. These special, designated days to highlight a healthcare issue are also great fundraising opportunities for groups that rely on public funds to help support their mission. These highlighted, yearly reminders simply give everyone an opportunity to hop on board and sharpen their learning curves.
Celebrating the progress I have made with my rare disease
As someone living openly with a rare disease, it's a good time to write an article in an attempt to deliver one of the best medicines I've utilized on my health and wellness journey: laughter.
From my perspective, looking back on the days when I tried to ignore hemophilia, any day where the condition made my attention toward it a necessity was a bad day. I'm thankful that this isn't the case now and that hemophilia is far less disruptive to my life than it used to be.
And that really is a cause for celebration!
What does Rare Disease Day mean to you? Share with us in the comments below!
How often do you run out of spoons?