Rare Disease Day

I’m often told that “I don’t look sick” or that “I look pretty good for someone whose in pain”. Unless you pay close attention, you wouldn’t notice my face wince or me holding my breath until the stabs in my face stop. On one hand, sometimes being invisible is easier. I know that when I look at myself, I see someone that’s different or someone that doesn’t fit in the same mold as everyone else; it can be nice to just seamlessly blend in and have people treat me like they would treat everyone else. On the other hand, there’s a part of me that wants to be seen, noticed, and understood. I don’t like having to explain myself and my illness time and time again. I don’t like that I always have to take the extra steps to obtain the accommodations and support that I need. I don’t like living with the feelings of judgement, misunderstanding, and the general awareness that a lot of people don’t take my illness seriously.

When people says things like that, I always wonder what they think “sick” looks like. Do I need to hold my face? Do I need to wear a mask? Do I need to show them the 20+ pills that I take everyday? Do I need to show them my MRIs? Do I need to be screaming in pain? Do I need to have my port accessed? Do I need to show them the scars from my two brain surgeries? What exactly does a rare disease look like?

To me, my rare disease doesn’t look like anything in particular. Whether I’m in the hospital or wearing a full-glam makeup look, the pain that I experience is valid and real. We put so much unnecessary energy into judging others at face value. On this rare disease day, I want to remind everyone that we never truly know what someone is going through. Whether it’s a child misbehaving, a person crying in a grocery store, or someone using a handicapped sticker even though they don’t “look disabled”, try not to judge. We could really use some more kindness in this world!

Happy Rare Disease Day!