Tuesday, July 5, 2022
With the goal of increasing insight and understanding into what it’s like to live with Atopic Dermatitis (AD), I, along with a cohort of other North American colleagues, including Canadian colleague Melissa, recently had the opportunity to participate in an immersive experience where, for 24 hours, through an orchestrated timetable of challenges I was given a glimpse of life, living with the condition. The simulation directed me to download an interactive app, be prepared to participate in live roleplay, and follow instructions related to a pre-delivered mystery kit of items. I then embarked on an experience that would deliver a deeper empathy to those living with this condition.
My day started with a wake-up notification earlier than anticipated. This was done intentionally given that for an AD sufferer, getting ready for their day can take significantly more time during a flare. I was instructed to open an envelope containing a single die, told to roll it and this would rank how my symptoms would affect me on that day. I rolled a “three.” And so would begin what I assumed to be the experience of an average flare. It was then time to shower, but today it would be lukewarm and would not include shampoo or any potentially skin irritating products. Also, no make-up. But whatever time I saved in avoiding my usual vanity driven routine would be spent ensuring I would make the most appropriate wardrobe choice as certain fabrics can aggravate a flare.
Before dressing, I pull bandages over my elbows and knees. The creases would meet with abrasive Velcro patches placed strategically to deliver the most discomfort with each arm and leg bend throughout the day. This simulated experience would deliver maximum punch. The experience would soon make me realize that cutting down my nails to avoid damaging my skin would be a worthwhile sacrifice. Then would come the prompt to take a picture of myself within the app. An applied filter would reveal that my flare had caused irritation to my face. To bring these symptoms into my simulated experience, I was instructed to apply make-up from the simulation kit in the same pattern. The balance of my day, including interactions with both colleagues and external stakeholders would be spent trying to explain my appearance. At this point, I questioned how those really living with AD handled their own interactions during a flare. Did they feel the need to explain? Did they avoid contact with others?
The increasing physical discomfort due to the Velcro bands, in addition to realizing the lack of choice I would have as it related to my clothing, food and exercise, began to cause increasing frustration. Then came the call from my simulation “boss.” She asked me to replace her at the last minute to deliver an important presentation to some key senior stakeholders. While my boss was aware that I was experiencing a flare, her need for me to fill in for her far outweighed any empathy she may have had. I would be given some time to consider accepting or declining the responsibility, but soon after a worsening of my condition (visible through increased facial skin irritation), I received a second call where the pressure from my boss left me feeling that I had no choice but to deliver her presentation.
The simulated discomfort would go on to interrupt my day when I least expected it (even at 2:00 a.m.) The need to manage my condition while concentrating on work deliverables, meetings and family obligations began to take its toll.
Like most, I’ve certainly had days where I didn’t feel my best and just crossed my fingers that these moments wouldn’t coincide with a pressure-filled agenda. Not “feeling at my best” versus an AD patient’s day during a flare is not even remotely comparable. The lack of control, embarrassment, and most of all discomfort caused me to feel frustrated and unpleasant to be around. I began to lack patience and I wanted it all to be over and done with. And with this, came my most profound insight of the experience. For me, this would all be over after 24 hours, but for those suffering with AD, it won’t be over until more effective therapies are discovered and hopefully, one day, a cure.
Also participating in the simulation from the Canadian team was Melissa, Continuing Health Education Manager. Melissa and Kerri connected throughout the Life in a Day experience and have since shared their experiences with Pfizer’s broader cross-functional team.