As a first timer at the ICN Community Conference, I was delighted to be able to attend the first half-day crash course on ICN with the new centers who have joined the network. Little did I know at this point that just how valuable that last bullet would be.
Myself and CF mama extrodinaire Breck Gamel () were honored to learn from this incredible network as we embark on our journey to improve CF care in a similar way. Steal shamelessly, share seamlessly!
There is no one on this planet quite like Sarah Myers. She leads her community forward in new and challenging ways with a laser focus on improving outcomes for the people living with this disease. She reminds all of the clinicians and researchers in the room, we're not inviting patients and families to participate, its their lives that we are fortunate enough to participate in.
At the welcome reception on the first night of the conference, I learned about their 24hr liquid diet challenge that was taking place the following day where 5 people would be chosen to consume nothing but liquid and share their experiences participating in this activity. I learned that many with Crohns and Colitis are often put on liquid only diets to better control their disease, and that there were many centers in the ICN Network that had clinicians themselves on liquid only diets for up to a week to even better understand the complexities of what they're asking of their patients. I immediately put my name in the hat, even campaigning about why I should be chosen, what it would mean to me to participate, and how seriously I would take this responsibility. I think these empathy exercises should be a part of clinician training and practice, as I gained so much more from this experience than I ever could have imagined.
I got some protein powder to put in a frappuccino from Starbucks and it was delicious. This was my breakfast.
It was surprising to me how aware others were of the fact that I wasn't eating. It was eye opening how social mealtime is.
Having our morning break offer liquid only allowed me the opportunity to participate in the same way that everyone else was, alleviating the need to explain myself further. I wondered how often folks living with IBD feel this same relief from the quiet frustration of always having to explain themselves, share a personal part of themselves with others who are curious about their activities or lack of participation in a very common event like mealtime.
I have to admit that sharing like I was made me feel a bit fraudulent. Even after having completed this exercise, I don't think I know what its like to live with IBD, but I do have a heightened awareness of invisible illness and some of the challenges that we face.
One of the most interesting parts of participating in this event was how aware I had become of the fact that people were constantly apologizing to me. When someone sat down with their snack and started talking about how delicious it was only to realize that I wasn't eating solid foods all day, they immediately apologized. I started asking what they were apologizing for, and most said they didn't know! It made them uncomfortable that I wasn't eating, and that they were eating in front of me.