Two things come to mind when I think about Rare Disease Day: community and “Freak Flag” from “Shrek the Musical.”
“We spend our whole lives wishing/ We weren’t so freakin’ strange”
Rare Disease Day is important to me because the term “rare” encompasses good and bad memories. “Rare” represents the times that I was lonely and isolated. After being diagnosed with cystic fibrosis (CF) at age 5, I spent weeks, months, years in an isolated hospital room away from family and friends. Although my support system went above and beyond to bring the outside in, there was no way to guarantee my inclusion. The disease inevitably leaves you drowning in respiratory infections, absent from the life you so desperately want to be a part of.
“They made us feel that way/ But it’s they who need to change/ (The way they think that is)”
Because CF is a rare disease, few people have heard of or understand it. Even those who have CF or know what CF is may experience a different journey than me. This “no one size fits all” definition even leaves those within the community feeling isolated. Awareness campaigns and organizations that bring patients and allies together enable empathy, slowly eliminating the negatives within the “rare.”
“It’s time to stop the hiding/ It’s time to stand up tall/ Say ‘Hey world, I’m different, and here I am splinters and all!’”
Rare also means unique. Uniqueness can be good. It means I was born to stand out. It meant, my path toward the same goals looked different. I’ve stumbled across many patients who also identify as unique and together, we make up a community of rare.
“But it’s not a choice you make/ It’s just how you were hatched”
The Cystic Fibrosis community looked very different than it does today. It was composed of mostly Caucasian children of Irish descent and their parents. The narrative was depressing as most did not live past the age of 5 years old. There was a complete lack of diversity and inclusion while the lack of research and awareness of the disease made it even more isolating for those that survived. The pipeline of new treatments was slim to none and further segregated those who were born with nonsense mutations as these would not be discovered until years later.
“Let your freak flag wave/ Let your freak flag fly/ Never take it down”
With each passing year, awareness and research developed by leaps and bounds. This awareness inspired and continues to inspire efforts towards a cure through change, understanding, and research. Understanding allows the average person to identify more readily those who suffer from a rare disease like cystic fibrosis and make them feel included instead of excluding because of fear or misunderstanding of symptoms or treatments.
All the things that make us special/ Are the things that make us strong!
Cystic Fibrosis is especially difficult to share with the able community because we do not always look sick. However, when most people hear what sounds like a contagious cough or they see someone pull out an enormous bag of pills, they make assumptions. Simple things, like sitting in a restaurant can become a very uncomfortable situation, when all you want to do is stand up and make an announcement that I am not contagious so please don’t pull your children away from me or give me dirty looks because you are much more dangerous to me than I am to you. I spent many years hiding my disease for this reason. You would think that when I became sicker, oxygen dependency and being wheelchair bound, acceptance would get harder, but it actually became easier in a way because those are things the able community can recognize and empathize with immediately. It is like you are then wearing a badge that says, I have a disease. As you can imagine, this is a double edge sword. So I became the freak, the inspiration, the topic of a families dinner conversation. Not where I really wanted to be but in some ways more tolerable than when my disease was invisible. I flew my freak flag!
The more that people understand about diseases, the more empathy, funds, and research becomes available. Information normalizes the disease and enables inclusivity and community. Even young children can be educated and allow them to be inclusive of those that differ from them.
I’m so proud to be a member of the rare disease community. As both a member and an advocate of a disease whose awareness has grown so much within my lifetime, I am excited for CF to eventually stand for a cure found. For now, I share my story and enjoy the inclusivity of the rare disease communities as well as the able community.