World Rare Disease Day
Image Description: Me smiling and standing in the middle of a garden nursery, wearing a black jacket, blue Levi jeans, holding a black cane in one hand and a mini cactus in the other. Taken in November ’19 by Tishan Baldeo Photography
Today is #RareDiseaseDay, a special day to shine light on the ~7000 rare diseases affecting more than 250 million ppl worldwide. It’s a day to educate the general public and to encourage researchers and decision makers about ways to improve and understand the lives of those affected.
I think the concept of ‘rare’ is generally perceived as a positive thing, as something remarkable, something few and far between, thus deeming to have more value, desirability and uniqueness. (Hell, even Selena Gomez recently released a song title called ‘Rare’). So, it should feel good to be labelled that, right? (See: #adjective goals). Now put the words ‘rare’ and ‘disease’ together, you’ll find yourself no longer wanting to be rare. You’ll want to be commonplace so badly, it’d be the first time you’re begging to be #basic.
Being rare comes at a cost—it means being overlooked because there aren’t enough ppl affected by your disease; it’s being told there’s not much research or information on your diagnosis and you’re on your own. It means being scared, confused, lonely, exhausted, in pain, misunderstood, misjudged, misdiagnosed, and misrepresented. It means fighting an uphill battle, every moment for the rest of your life, repeatedly being forced to confront your own mortality. It means consciously choosing to transform sadness, anger, grief and loss over your former self, into acceptance and empowerment. It means fighting for your needs to be validated and respected in a world you don’t fit in.
Being rare—in many ways—is something to strive for, you can say you’re one in a million, but if you’re living with a one-in-a-million disease, you’ll be damned your spirit can’t and won’t break. Happy World Rare Disease Day, my strong chronic-illness/disease fighting warriors ♥️