Being Black with cystic fibrosis means that because of this blog, I may experience backlash.
Being Black with cystic fibrosis means I feel different.
I remember when it started.
When I was a teenager, a TV show premiered featuring a Black person that had CF, and there was outrage in the CF community. They said that the show didn't represent what CF “really looked like.”
I remember thinking, but that's what I look like. Do I not have a right to be represented? Am I not good enough to be represented? What's the problem with being Black?
When I first tried to enroll in a clinical trial, I was told that I didn't qualify because one of my numbers for my liver came back too high. However, what I learned was that the numbers they say are “in range” are based on white males. My numbers were fine for being a Black male. Yet, I was still rejected.
Fast forward to the beginning of the George Floyd protests and my feed started to fill with prejudice, racism, and ignorance. Once again showing me, that I do not belong.
Being Black with cystic fibrosis means being misunderstood. It means being left out because approximately 5 percent of people with CF are Black. It means being an afterthought.
It means that when I go to the hospital, it isn't until my white mother shows up that I get treated equally. It means being denied proper medicine, attention, and treatment, until they realize that I'm half white. I'm 26 years old, and I still have to rely on my mother in a sense to make sure I'm taken care of. Not because I'm immature, or because I don't know how to take care of myself, but because of the effects of what it means to be Black with cystic fibrosis.
During this time, I personally don't have the answers for how to right any of these wrongs. However, I believe that many still don't know what it even means to be Black with cystic fibrosis. So, I write this to finally be heard, to be acknowledged, and hopefully to be understood.
Signed,
Bobby Foster
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