Snide remarks started before I was even diagnosed.
I had just consumed 32 ounces of chalky barium contrast, and was concentrating on trying to relax my stomach while the radiology technician inserted the contrast IV into my left arm. I knew what the CT scan was for. I knew that we were checking for signs of lymphoma, and I was scared out of my mind.
“Thank God it’s Friday, right?” he said to me.
“Actually, I hadn’t noticed. I’ve missed eight weeks of work because I’ve been so sick for so long, so I honestly hadn’t thought about what day it is.”
“Must be nice,” he said as he left the room to begin the scan. I inhaled deeply, following the instructions given to me by the mechanical voice, preparing to hold my breath for the scan.
I would have given anything to be at work that day, instead of where I was.
Not everyone with fibromyalgia has this experience, but a specific event kicked off my illness and lead to a diagnosis. I caught what I initially thought was a bad flu. It was the sickest I had ever been in my life. It soon became apparent that whatever I was dealing with was not the flu.
I ultimately ran a fever every day for over three months. It was physically trying, but the worst part was the constant terror. I never did get a label or specific cause of those fevers. (My medical team ultimately hypothesized that it was a very nasty viral infection after other potential causes had been ruled out.) I was put on three rounds of antibiotics. I lost weight. I had been through an enormous battery of tests spanning months, investigating the possibility of autoimmune disorders, as well as hematological cancers or other malignancies. I spent my birthday numbly awaiting the results of that CT scan. I spent a lot of time wondering if I was dying, terrified that I would end up passing away before anyone figured out what was wrong with me.
Eventually, after months, the fevers slowly subsided. My appetite came back. But my energy remained sapped, I was still dealing with unexplained pain, and using my once lightning-sharp, doctoral student brain felt like pushing a stalled pickup truck through mud. After visiting seven different doctors in my home state, doctors at the Mayo Clinic finally gave me the diagnosis of fibromyalgia and I was given a treatment plan. With their help, five months after the initial onset of this “viral infection,” I am just now attempting to re-enter my work environment. I still don’t know if that is going to be successful or not.
But at no point was my unexpected hiatus “nice.” There was nothing pleasant about what I went through. I spent most of that time bedridden. There were days when I went to bed dreading waking up the next morning because the thought of surviving another day was so daunting. At first, the comment from that tech didn’t really penetrate. I was busy worrying about whether or not I had lymphoma and trying to follow the breathing instructions from the machine. But as I’m recovering, and spending more time reflecting on the diagnostic process as a whole, I find it bothers me more the more I think about it.
I am certain it was not said with malicious intent. I am pretty sure he was tired after a long day at work, and looking forward to going home for a relaxing weekend. But being so ill that I found myself out of work was not, and is not, “nice.” I would encourage anyone who feels that those with disabilities and/or chronic illnesses have been dealt a “nice” hand to stop and think about what you are actually implying.
Again, in that moment on that Friday afternoon, I’d have given anything to just be at work.