How Do You Describe That?

Have you ever sat down to send a communication to your healthcare team and were unsure how exactly to describe your asthma symptoms or what you were experiencing? I recently had this experience trying to draft a note. I needed to be concise and I just could not seem to get there in my drafts. In the past, I do not think I have had this issue describing my symptoms or what I was experiencing, it all felt very straightforward. This time I felt like I was new to patient life, or I was unsure of what I wanted to get out of the communication. I needed to put the big picture in context. I need to know what my next steps should be or any interventions.

How should I describe your asthma symptoms?

I found myself fumbling for the words to describe my symptoms. I concluded that my symptoms were a jumble of many different things and I was going to need to sort through the little bit of this, and the little bits of that, to put it all together. It was a full potpourri of things. I took this in stride, thinking it was about learning about my new normals and how to describe them. I also wondered if it was even still useful to describe my symptoms, in comparison to previous symptoms. It just did not seem to be valuable anymore. Where was I to go from here?

My approach

I decided to just start at the beginning with a running list. After all, the symptoms were just symptoms, and I began to note the degree to which my symptoms had changed or I was perceiving were in decline. I also noted what I considered the degree.

It was the changes to my sputum that proved to be the most challenging to describe, color changes, texture changes, for example: "mostly thicker", perhaps "a bit chunkier." I determined it was difficult to describe "chunky" regarding the appearance of my sputum or the exact feeling of air trapping. I went with describing what it felt like to not fully exhale and feeling very full.

I then related my symptoms to my usual tasks and activities, and I realized, I was basically describing my symptoms in terms of asthma questionnaires. It was similar to describing the questions in an ACQ 5 or AQLQ. From my days as a research patient, I have had a mixed relationship with questionnaires. The ACQ -5 is easy peasy but the other ones always seem so tedious. I guess I am now going to have to eat my words because I was using them to describe my patient-reported outcome.

What I keep in mind when writing these communications

I always question if I am going to be taken seriously, when I write these types of communications. With the stretched health care resources at this time, I want to make sure that I:

1. Stay on the good side of my care team.
2. Am an active participant in my care by providing clear communication of asthma symptoms and issues.

What are some of your strategies for describing asthma symptoms or your patient experiences? Have you ever had a difficult time describing or relating your symptom to a care team? I would love to learn about your tips.