Faking It: April 27th, 2022

My MR report came back yesterday evening, which showed a new lesion in my brain. It actually took me by surprise more than anything. Since starting Ocrevus infusions in 2017, my MRs have always been reported as stable; even over this past year, despite having three relapses**, nothing ever showed up on imaging. I now understand that MR technology isn’t perfect and that not all MS lesions are temporally associated with symptoms, or even visualized at all. And yet, while early on after my diagnosis I used to lie in the machine worrying about the changes that would be found, I’ve come to just assume that everything will be stable.

In January 2022, before pursuing transplant at the Cleveland Clinic, I met with a neurologist in Ottawa who is, I believe, the only person doing transplants in Canada. I was warned ahead of time that imaging factored heavily into his decisions, and that because my MR from December didn’t show any new activity, I might not be considered a suitable candidate for his program. What I didn’t expect was to sit in his small hospital clinic room and be told to my face that I was faking. He used the medical term functional, which means that no organic cause can be found for a person’s symptoms. And he was very earnest in telling me that my MS was entirely unchanged from last year, despite my very real progression from having virtually no gait limitations to using a walker (ahem, rollator), before improving to need only a cane.

Even though I knew the truth, and as a physician knew how entirely effed up the whole encounter was…a piece of me believed him. I was inconsolable, not for being rejected for transplant, but for feeling ashamed that his assessment of me might possibly be true. My experience was the very definition of gaslighting, and even though the overwhelming anxiety of it ebbed with repeated reassurance from my medical team (yes, I asked all of them), the seed of doubt has never entirely been crushed. This MRI will help. So will my recent OCT test, which showed damage to my left retina from the optic neuritis I had back in November. I guess we all need validation.

In chronic diseases, people often pretend to be well while shouldering the burden of their symptoms: no one wants to be defined by their illness. Simply put, we are not the kind of people who fake it. But how many of us has ever wondered whether, if we didn’t try a little bit harder, we could be doing a little bit better.

** Okay, two to three relapses. I had a relapse at the end of June, and then one beginning in September that included ataxia, new right leg weakness, and worsening left leg weakness. It evolved over an unusually long time, culminating with optic neuritis in late November. Because a relapse normally evolves much more quickly, it’s not certain whether the optic neuritis was a separate relapse, or still part of the one that started in September.