By Cade Johnson
I was sick as a child. Frequently, notably sick. A few days after my birth, my mother returned to the hospital because I wasn’t nursing. Within a year, I was back again, then for severe and recurrent ear infections–fortunately, treated in time with a myringotomy tube surgery to avoid permanent hearing loss. My mother, an artist with an MFA in photography and a lifelong personal tendency towards archiving, took plenty of photos even when I was in the hospital.
One photograph, in particular, stands out in my memory: a child, small even in a pediatric bed, wearing a tiny blue surgical cap, surrounded by nurses. This was the first of my medical troubles, but unfortunately–in a foregone conclusion, perhaps–far from the last. My extremities today have pale scars at the wrists and ankles, ghostly reminders of several bouts of impetigo. The weeping sores were difficult to differentiate from the broad swatches of itching, ruby-red and blistering hives that would also cover my skin. During childhood, I experienced migraines that ruined birthday sleepovers, frequent UTIs, and episodic diarrhea that kept me doubled over and dreading public restrooms. In high school, I was plagued with fainting and fatigue. After a few emergency room visits, I was diagnosed with a mitral valve prolapse which made participation in athletics unlikely–not least because of persistent clumsiness that resulted in broken bones, twisted ligaments, and battered flesh from unlikely accidents.
But it wasn’t until well into adulthood that I was diagnosed with the chronic illnesses that follow, the names and symptomatologies that I use as shorthand for providers and friends alike. Irritable Bowel Syndrome (IBS), fibromyalgia, hypermobile type Ehlers-Danlos Syndrome (EDS): they give shape to my experience without needing an exhaustive account of the whole saga. Did I instantly become chronically ill the moment those words appeared on my chart? Simple logic says no, but reconciling my identity and autobiography with this “new” designation was still a startling shift. I felt like the revelations raised more questions than they gave answers, an experience that, as a historian-by-training, was both exciting and daunting. Here was a much larger question to be answered via research, documentation, and observation, rather like the archetypal detective–my personal tendency in dealing with challenges in life is to intellectualize.
Yet being a young person with a chronic illness can feel like being stuck in a never-ending detective novel. Still, it’s not nearly as exciting to live in a mystery as it is to read one–the twists and turns, red herrings, and double-meanings are less thrilling and more exhausting when it’s not your entertainment or your academic pursuit and instead is your life. No one wants to be the last page torn out of the journal or the cryptic message left on the answering machine.
That said, I have come to realize that it doesn’t have to be like that. With peer support, community building, awareness raising, provider collaboration, and policy change, being a young adult with a chronic condition can be, if not exactly easy or straightforward, at least not an endless series of riddles. I’m proud to be a part of Generation Patient and our mission to empower young adults with chronic illnesses not just to survive but to thrive.