Sitting at the front of the room in one of my favorite instructor’s lectures (I think it was Physical Activity and Aging), there’s a lecture on respiratory disease, seniors, and asthma unfolding around me (pause: yes, I didn’t just play in the gym/in fields all the time! Un-pause.). My instructor flicks the slide to asthma, starts to explain and pauses, looking at me.
“Hey,” She says, probably suddenly remembering the asthma presentation my group and I did in her Adapted Physical Activity class a year or two prior, “Kerri, you can probably explain this better than I can. Want to take over?”
I jump in, trying to turn sort-of towards the bulk of my classmates from my seat. In about two minutes (with a few prompts from my instructor to make sure I’m covering the right bullet points) I explain how exercise-induced asthma works, how it’s treated, and other brief strategies for exercise management like warming-up and cooling down. A couple students ask questions, and eventually I get to turn around again.
My instructor has a Bachelor of Physical Education and a Master of Science. Yet, she’s worked in a lot of situations directly with patients: with mature women, older adults at an outpatient rehabilitation centre, and with a bunch of other populations that she knows a lot about, but the cool thing was: she took that moment to step back and realize that someone with the experience she was about to teach on was right in front of her. (And of course, she knew I wouldn’t mind being “called out” and put on the spot for it from our previous encounters!).
As engaged, educated, empowered patients, we are the experts. Not every patient chooses to be an expert in their disease, and that is okay. We should have a basic understanding, however. And if you decide you want to learn more, that should be encouraged by the people around you (or you need to find different people). Even if we don’t have all the book knowledge a researcher, doctor, or other professional might, we have other super valuable knowledge: the experiences we have accumulated from living with asthma and figuring out how to navigate our worlds with this information.
One person at a time—or, one patient at a time—the medical and health communities are beginning to recognize this, embrace it, and ask us for our experiences, our input. Our opinions are not only valid, they’re becoming valued. Because even if I don’t know about all the molecular stuff going on in my body, I know the experience of living with that stuff. I know what asthma feels like to me, both in my lungs and in my head. For people who are going to be working with people with asthma, this is really crucial information. For practitioners without asthma, it helps give them a sense of “What is this like, at least for this patient?” and helps them develop empathy for when they encounter other people like me in the future.
“You can probably explain this better than I can,” validates my experience. It reminds me that my story is important and that my story needs to be told. And it reminds others that the condition you are reading about doesn’t just exist in a textbook: it exists in my body, and I am living that experience completely unlike a textbook!