14 Narrative Ethnography
Seeking Answers
Trying to get my physical done on time to play tennis seemed my most pressing concern as I approached my freshman year of high school. That was until the physical appointment ended when I got a diagnosis that flipped my world upside down. I remember sitting in the doctor’s office after running through all the typical testing, and the sudden intrusion of the door opening drew my attention to the grim look only found in a doctor with bad news. I felt uneasy, as I wanted to play tennis and it was seriously important that I get this physical done as soon as possible. Never would I expect that the next words out of the doctor’s mouth were to inform me that I had a severely curved spine. Suddenly, I was overwhelmed at age fourteen as the doctor started listing the complex health possibilities of a collapsed lung or major surgery should the curve continue to get worse. I couldn’t help but start bawling at the thought that my life course might be altered due to this issue. The treatment options gave me little hope too, as the doctor told me that all they could do was pause the curve by giving me braces to wear most hours of the day. This was out of the question because my social life would never survive wearing a brace. I could picture movie scenes of the weird girl with a neck brace who tries to take a sip of her water, only to spill it all over herself. The laughter of this scenario, the humiliation, the embarrassment. That girl would not be me. Little did I know that day was the beginning of many more gray rooms and grim faces.
As I aged into adulthood, I encountered health problems that ranged from fun quirks to issues impacting my daily functioning, and my doctor’s visits were consistently filled with a lot of questions and no answers. I was experiencing joint pain that seemed out of place in my young healthy body, and I felt exhaustion and fatigue on a seemingly higher level than everyone my age, and I spent much of my time going to a doctor looking for a solution, or even an explanation. One such day was when I saw the doctor when I was in my 20s with the intention of finding out why my hands were consistently in pain. This pain was making it hard to do everyday tasks and I wanted to have an explanation that would help me solve this problem. I felt anxious walking into the appointment, as I hadn’t had a lot of success in the past with these visits, but I still held on to the hope that they might find a reason for my pain. That hope almost lasted me to the middle of the appointment. At that point I realized I was on the same merry-go-round that I always was when they told me that I was too young to be feeling the pain I came to see them about. Instead of addressing my pain with sincerity, the doctor looked at me and told me to relax when holding my pencil. It felt like the doctor’s office was just swallowing me whole, eating away at my sanity appointment after appointment. I felt in that moment like a hypochondriac as the doctor continued to cite explanations but say that I was “too young for this” or “too young to have that”. The whole merry-go-round felt like a losing battle, one that I had been fighting for years.
In the end, I arrived at a turning point one day when I least expected it at the age of thirty-five. I had gotten married and had two kids, and yet my health seemed just as much a mystery as it had been a decade ago up until I took my youngest to see her doctor. As the doctor was going over my daughter’s health, he made an offhand remark about how my daughter was hypermobile. It made me pause and he noticed this and told me, “Well, you’re hypermobile too”. I had never put a name to this ability, but I took this information and ran with it. Knowing the name of this condition and knowing there were similarities between my daughter and me, gave me a starting point. And, after hours of research, I discovered that a genetic disorder called Ehler-Danlos fully explained the challenges that I faced every day. With this information, I carefully crafted an entire case file of genetic history showing some conditions in past family members that would indicate the presence of this genetic disorder before making an appointment. I was prepared to lay it all out on the table to finally be listened to. Luckily, the doctor that I got an appointment with was one of the few who would just accept what I observed about my own health. As a result of this, I got about halfway through my speech when he stopped me and said he would write me the referral to a specialist I was hoping to get. Finally, I had a diagnosis from this specialist of Ehler-Danlos, and it unscrambled all my jumbled puzzle pieces. I felt vindicated. After all these years of being told it was in my head, at the age of thirty-five, here was a concrete explanation for what I had been through. After the vindicated feeling wore off, I had some harsh realizations. I realized that I would never have gotten a diagnosis if I hadn’t done my own research. My health was only addressed when I took it into my own hands.