A few colleagues and I recently participated in an empathy exercise based off the popular party game “Cards Against Humanity.” The object of our version, “Cards For Humanity,” was to help us briefly “walk in the shoes” of a person with cystic fibrosis.
We each picked a card. Mine read, “You need an inhaled medication. Put a nebulizer in your mouth for 30 minutes removing it only long enough to speak.”
This should be no problem, I thought. After all, I worked with CF adults as a nurse practitioner for a number of years before joining the Foundation, so I'm very familiar with the treatment regimen.
For the first few minutes all was well, but then, the muscle around my mouth gradually began to hurt and saliva built up in my mouth. I was surprised by how uncomfortable it was and wondered how I would be able to keep this up for another 25 minutes. All I wanted to do was to break the seal around the mouthpiece to swallow and to relieve my muscle pain!
I did quickly learn how to do this and gradually began to focus on slow abdominal breathing and exhaling through the mouthpiece.
Interestingly, though, in those first few minutes of the exercise, I noticed I was feeling a lot of pressure to make sure I used proper technique. I had instructed people with CF how to properly administer neb treatments countless times, so I should know what I was doing, right?
I also felt pressure from two well-intended colleagues who were trying to coach me on how to do the “treatment” correctly. I surely didn't want to look like I was struggling.
At the end of 30 minutes the timer rang, and I removed the neb. My first reaction was, wow, what an eye-opening experience. Although I cared for people with CF for many years, I had no idea of what it was actually like to put this piece of equipment in my mouth.
In addition to the physical discomfort, I also was struck by a feeling of being tethered and restricted. While the conversation continued around me, this mouthpiece was preventing me from taking part.
The Other Side of the Nebulizer
I was also surprised by how it felt to be the one receiving instruction on how to use a nebulizer rather than the one giving it.
As the saliva was building up in my mouth and my mouth muscle ached, I heard my colleagues saying, “Make sure you keep your mouth closed tightly.” Upon reflection, it would have been nicer to hear, “How's it going?”
This experience has helped me to view this “simple” treatment with fresh eyes. I am now more aware of the potential physical and emotional responses that can arise with any treatment, regardless of complexity. Most importantly, I came away strongly believing that conversations around treatments should first ask how it's going before delving into education.
I am very appreciative to have participated in this exercise allowing me to briefly step into a tiny piece of a person with CF's life. I am in awe of everyone who does the real neb treatment, not one, but multiple times a day and of the parents who work with their young children to keep a mask on and teach them how to use a mouthpiece. You are amazing.