It's officially May, which means it's Cystic Fibrosis awareness month. For those of you who are unaware, Cystic Fibrosis is a chronic lung disease. The thing about CF that a lot of people don't know is that it kind of used to be a death sentence. I was diagnosed with CF when I was baby, so I unfortunately don't know what life is like without that diagnosis.
Every May, Cystic Fibrosis awareness month comes around, and I feel like I'm not doing enough. And yet...isn't it enough to have to live every day with a life-threatening illness? Isn't it enough to carry around the fear of getting sick?
Here's the paradox about growing up with Cystic Fibrosis (or any chronic illness, really): you want people to acknowledge your suffering, and yet you don't want it to define you. It's the exact same way with mental illness, with so many of my intersecting identities. I have spent so much of my life not wanting to be "the sick kid," and yet as I grow older (CF is a progressive disease, meaning it worsens as time goes on), I realize that maybe it's time to reclaim the identity of being a sick kid. Because...isn't that what I am? Sick? Maybe not all the time, but...
Cystic Fibrosis has had a large impact on my life. It's not the entirety of who I am, just like the rest of my identities aren't the entirety of who I am. It's not all of who I am, but it's a big part of who I am. For so long, CF has been like this ugly sweater I hide in my closest but bring out once a year. But I am done being ashamed of myself for having an illness I can't control.
I realize as I'm writing this that I will probably make this post and then stop thinking about CF for a little while. I'm privileged enough as a CF'er that I don't need to think about CF all the time, and I recognize that. While it's something that is frequently on my mind, my health isn't a primary concern in my life. I'm grateful to be able to say that and am grateful for all the advancements in the medical field that have been made to make CF no longer a death sentence.
I'd like to end this post on a positive note. Someone who changed my life forever in the CF community was Claire Wineland, a YouTuber who made videos about her experience with CF. While I didn't know her personally and didn't discover her until after her death, I was touched by her story because she managed to stay positive through it all and was able to have a huge impact on so many people. Unfortunately, Wineland died in 2018. So this May, I want to say: Thank you Claire. Your legacy lives on to this day.
