Recently, I had to step away from Girls Behind the Rock Show.
It was not because I was unhappy with my work, or because I just didn’t feel like it.
It was because of a new medication for my chronic illness, a lung disease called cystic fibrosis (CF). While it is literally life-saving, it changes every cell in your body. And while I haven’t coughed in weeks, I have been incredibly fatigued. And I know I’m not the only one who has faced this.
Chronic illnesses are not talked about much. There is a certain stigma against them – be quiet and act normal, or you’re not useful to society. You’re lazy. You’re over-exaggerating. It’s dangerously ableist, even if it’s subconscious. We are taught that in order to have worth, we must be high-functioning. Proud of our lack of sleep, our stress, our full schedules. And, yes, these can be accomplishments. But assigning value to these qualities degrades those who cannot live up to these standards.
There are also plenty of misunderstandings. I am a singer-songwriter on top of being the editorial director for GBTRS, and a statement that I regularly receive is “that must be hard, with your lung disease.” It’s a harmless statement, but it goes to show that people have the idea of struggle engrained in their brains.
But my chronic illness does not define me. I am a sister, a daughter, a friend, a singer, a writer. My cystic fibrosis doesn’t change that. Chronic illness does not define ANYBODY.
People can educate you on their chronic illness. There are so many out there – it’s impossible to learn about all of them. But should you need an education, come from a place of empathy rather than accusation. It’s easy to assume what someone is going through in a general sense, but every illness has its own unique features. Ask questions. We’re happy to help you understand.
It’s been two weeks since I started this medication, and I haven’t coughed since my second dose. I can breathe like a normal human. I know what it’s like to laugh until my stomach hurts, to sing until I’m at the very end of my breath. I am grateful every day.
Cystic fibrosis does not define me. And everyone with a chronic illness can agree – we are our personalities, our likes, our pet peeves, our favorite colors, our least favorite foods. We are not defined by how our bodies misbehave.
We define ourselves. And we are proud of that.