Calling me ‘inspiring’ isn’t the compliment you think it is
Some advice: Don't call me inspirational just for existing
“You’re such an inspiration!” the customer across from me said. I was standing behind the mosaic counter of the art gallery where I volunteered during my teenage years. Hearing this person call me inspiring made my stomach turn. I’ve always hated being called that.
My mom, who is the president of the nonprofit that oversees the gallery space, was in the back room teaching an art class while I helped the customer pick between two pieces of pottery.
“Well, that one’s my mom’s, so I’m biased,” I joked, which led to questions about my relationship with her, since I was volunteering at the place that sold her work. Are we close? How did my mom get started doing pottery?
“Well I have cystic fibrosis,” I said. I’ve never been shy about disclosing my CF diagnosis. “It’s a genetic disease, and when I was diagnosed, my mom decided to stay home and take care of me full time. But then I started going to kindergarten and school, and she needed something to do.”
Like many others with all kinds of chronic illnesses, I’ve been called an inspiration by well-meaning friends and strangers since I was a small child. And every time it feels like the person I’m talking to sees me as some distant mountain peak they’ll never reach.
Even in the best of situations, calling me an inspiration implies that I’m something worthy of awe just because I’m alive and doing the same thing the person across from me is doing — existing. The comment is often prompted by me telling someone I’m in school or that I also work while finishing my student and teaching obligations. It makes me feel “othered.”
I find it slightly ironic, given the lung-related complications and symptoms of CF, that the word “inspire” means, in both a literal sense and by its oldest definition, to breathe.
We often tend to call something inspiring when it makes us feel compelled to act in some way. Given the word’s origin, think about when nature “takes our breath away,” as the saying goes. When I drive along the Blue Ridge Parkway and see the prehistoric curves and ridges of Appalachia, and the long-range and layered mountain views, I feel like a small and blissful speck in the universe. When seeing things like this, we are inspired.
We can be moved to act in a variety of ways. We’re inspired to speak about topics we care about. We are inspired to sing along at concerts. Artists often talk about dreams in which muses bring inspiration for a new project. Activists say they’re inspired to protest and educate people about the injustices of the world.
When someone tells me that my life with a chronic illness inspires them, I always wonder what it is about having mucus-filled lungs that impresses them. Perhaps it’s with a bit of bitterness, but I wish I didn’t have to carry that weight around.
Maybe I’m being unfair. Perhaps, for instance, I did inspire that customer I mentioned earlier to take positive action. What if that person went home and donated to the Cystic Fibrosis Foundation? It’s not impossible to make the logical leap that some of that funding from supporters helped to develop the breakthrough treatment Trikafta (elexacaftor, tezacaftor, and ivacaftor), which has worked so well for many CF patients that it’s often referred to as a “miracle drug.”
The truth is, I hope that by telling my story — writing these columns, writing poems, talking to people about the truth of living with CF (especially during the COVID-19 pandemic) — I can inspire people to alter their behaviors so that they’re based on empathy and inclusion.
Maybe I could add a clause to my rule: Don’t call me an inspiration unless you can cite exactly what it is I’m inspiring you to do.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Gisele F Lapointe
Kristin, yes, you're inspiring because you're dealing with this fatal disease as best you can, being as "normal" as you can be; you would not be inspiring if you had given up and contemplating suicide.
Kristen, I agree with your sentiments about being called "an inspiration." I do feel "othered" as you say. So many people have said I should write a book. Write a book about what?? I just do what I have to do every day for my body and I've never known life any differently. I don't feel I have any special wisdom to share with others based on my life with CF.