It’s important to have empathy, even if someone else’s journey looks different
Not everyone experiences chronic illness the same way
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Many years ago, my family got word that a new organization was putting on a street festival in the city. Because it fell on a day when everyone was free, we planned to attend solely for the spectacular fireworks show promised at the end.
With about 10 minutes to spare before the start of the show, my family, along with hundreds of other people, found what we thought was prime fireworks-watching real estate. When we saw the first fireworks shoot into the air, the crowd cheered.
Only, there was one problem.
According to the National Fire Protection Association, spectators should be kept at least 70 feet away for every inch of the largest aerial shell’s diameter. Depending on the size of the shells used, that can mean several hundred feet between the crowd and the launch site.
Our section of the crowd was, at best, a few hundred feet from the launch pad. While the display was meant to be spectacular and beautiful, the area that our family and hundreds of other families were watching from was soon engulfed in smoke. By the end of the 15-minute show, everyone in our section was covered in a thin layer of gray ash.
“That was not fun,” I heard one of my children say as we started the long trek back to our parked car. I couldn’t blame them. But I did notice something else.
As we walked, we started mingling with people who were at the same show, but several blocks away. They raved to their families about how gorgeous the display was, and how they couldn’t wait for next year.
“How can they think that?” our girl twin lamented. I chuckled as I brushed ash out of her hair.
“It’s not their fault,” I replied. “They just weren’t sitting where we were.” And it was true. The other observers had an entirely different and more pleasant experience solely because they were in a different place.
Recently, I thought about this experience, and it dawned on me that it mirrors the different journeys of chronic illness.
We all have different perspectives
When our oldest daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema, like most people trying to find answers, we experienced a challenging ordeal.
I found myself aggressively advocating for her care during emergency room visits and challenging insurance companies when Ladybug’s emergency or preventive medications were denied coverage. Initially, I had to make exhaustive efforts to be heard in pediatric ERs when her symptoms weren’t visible. We engaged in a meticulous campaign to ensure that she wouldn’t be penalized for missing school due to hospitalizations and had enough time to make up her work. We faced caregiver fatigue and patient post-traumatic stress disorder, and there were days when I felt as though we were covered in proverbial ash from the fallout.
But as we continued our journey, something shifted. Ladybug started recognizing her symptoms earlier. We found a rhythm in our insurance conversations. We got to know the pediatric ER and main floor staff. Our current experience isn’t perfect, but there are moments when it comes together beautifully.
Still, I recognize that not everyone is there. Having been in a space of uncertainty and exhaustion, I realize that some caregivers and patients are still in the “fallout zone” of their journeys. Because of this, I believe that in our chronic illness communities, we have the responsibility to empathize with those individuals, because even though some of us may be experiencing something different, they are still there.
No matter where they’re sitting, let’s make it our business to have empathy for everyone in our community as we experience these journeys together.
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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