Somehow I manage to miss Rare Disease Day (Feb. 28th) each year. I’m always late to the party and one step behind (this is a particularly bad habit when it comes to birthdays…). Maybe it’s because I don’t know what to write for Rare Disease Day. Maybe it’s because I feel particularly useless and like an impostor. It’s hard to write a blog post when you feel like a fake with your own disease, while having no one around who can empathize or who have gone through similar things.
I think that’s the thing that sticks out the most with a rare disease: It’s lonely.
I watched a documentary of a patient who had a rare neurodegenerative disorder. When he got diagnosed, he said that what he felt the most was the incredible loneliness of it all. That one word stood out to me. Loneliness. Yes. Overwhelming, unbearable, heart-breaking, self-destroying…loneliness.
I have never met someone, unrelated to me, with my rare disease.
No one with my rare disease, in my online support groups, lives in the same state I do.
My doctors ask me how to spell and pronounce my rare disease.
My doctors and my family’s doctors ask me how they should treat the rare disease.
My rare disease has no cures and no effective treatments.
There are no commercials of my rare disease. No awareness walks or marathons. No fundraising events for a cure.
People with rare diseases? We are the forgotten ones in the medical field. We are the ones who the doctors hate, with our odd symptoms, our rareness, and with our life-long, life-threatening, incurable rare diseases.
Having a rare disease means fighting for a quality of life, struggling with tasks that should be effortless, and even battling for your life….alone. Yes, friends are there and are helping to push you through, but in the end, they can’t battle for you and they don’t know what it’s truly like to have that battle.
So what does my rare disease mean for me? What should you equate with “rare disease”? Loneliness. Heart-breaking, depressing loneliness.