How a simple act of empathy had saved my life
by Sarah Crowell, Nason Group Design Strategist
The other day I was stuck in traffic during a rain storm and I suddenly realized my thoughts were being interrupted by a familiar, dull pain in my knee. My mind was flooded by memories of the stormy, painful spring seasons I experienced as a teen growing up in the Ohio valley.
I was 12 when I was diagnosed with an autoimmune disease and had my first real brush with the “patient experience”. I noticed a rash on my legs after returning from a bike ride through the woods. That rash turned out to be acute urticaria. (That’s fancy talk for a bad case of hives, a non-contagious red, bumpy rash.) It stayed with me nearly every single day for over five years (teenage years at that—the worst!). Eventually the rash started developing on all my joints, making them painful and swollen. Things got steadily worse. Some days I couldn’t hold a pencil or walk. Other days, the cartilage in my throat would swell, causing my voice to change and making swallowing difficult.
Every time severe weather would roll through during spring, my body would join the chaos and scream in pain. During tornado watches, I wouldn’t be able to walk. I had heard people say that their knees hurt when the weather changed, but I hadn’t given it much thought. It’s hard to imagine other people’s pain, especially when it’s “invisible”. I struggled to communicate to my friends and classmates just how serious my health condition was. I didn’t have a cast, so how bad could it really be? I tried so hard to pretend I wasn’t sick. I still played soccer even though it meant I wasn’t going to be able to walk the next day. When my hands and wrists would be too sore to function properly, I’d patiently wait on the front step after school for my mom to get home from work and let me in the house because I couldn’t twist the doorknob and was too stubborn to seek help.
Though my pediatrician was unable to diagnose me, I was referred to the Rheumatology Clinic at Cincinnati Children’s Hospital by a concerned and forward-thinking school nurse. She noticed I was coming in regularly to get ice packs for my joints, asked me about my symptoms and listened to my experience. Later I realized just how much her empathy had saved my life. At the time, it was an adult finally offering a solid pathway to receive help.
But, as a teenager, I didn’t just want help. I wanted my life back! I wanted answers! I wanted someone to look me in my face and tell me that there would be a day in my future where I wasn’t in acute, chronic, debilitating pain. Help for me as a chronically ill teenager ended up being an incredibly patient, knowledgeable and loving Rheumatology team at Cincinnati Children’s. These medical professionals were heroes—every single one of them. Overseeing complex, inscrutable autoimmune disease care for an angsty teenager who also happens to be amazingly sick isn’t for the weak. I was angry. I wanted to be “normal”.
Over a period of months and years, I came to realize there’s only a handful of people in this world who truly understood what I was going through: my mother, who often had to listen to me cry myself to sleep from pain, and my Rheumatology team at Children’s. They all suffered when I suffered. They had me start therapy because they knew chronic disease is hard for anyone to cope with, especially a developing adolescent. They gave me hope when I had none. They gave me relief, although most times my illness overpowered even the best treatment options. My wins were their wins and when I was able to go longer and longer between visits, they cheered with me.
I often forget just how tough those years were, but when it comes up, I’m immediately reminded of how grateful I am for Dr. Passo, Janilee and the countless other providers and residents at Children’s who helped me not only to survive chronic illness, but thrive with it by providing holistic care. They not only worked to cure my ailments, but they also made me feel heard. For them, quality patient experience meant listening, loving and working tirelessly to find answers. Seeing them fight that hard for me made me want to fight hard to stay positive and hopeful. Patient experience was so seamlessly interwoven into the care I received that I never even had to consider it. I never doubted how dedicated they were and I’ve certainly never forgotten it.
As a design strategist, it makes complete sense to me that I ended up working in PX (patient experience). I’m so grateful to have had an incredible medical team demonstrate for me what great care looks and feels like.
If I hadn’t have a team who put themselves in my shoes while I was going through some of the toughest things life can throw at someone, I’m not sure what my outcome would have been. Now that I get to be the voice of the patient, I have a special interest in not only bringing them along on every step of the process, but in really making them feel heard.
I’ve made it my life’s passion and mission to share that experience with others by disrupting the health care status quo with the Nason Group and by always putting patients at the center of everything we do.