Guest Voice: What living between labels taught me about MG

Tears gathered in my eyes as I read the disappointing visit summary from a neurology appointment.

Being a seronegative myasthenia gravis (MG) patient, I’m leery about seeing neurologists for fear they will dismiss the diagnosis that took years for me to get, but I left the appointment pleasantly surprised when it wasn’t questioned. The appointment wasn’t rushed, and I underwent a thorough physical exam. Mild weakness was noted during the eye closure test, and I experienced double vision, not once, but twice, when staring upward at a doctor’s erect finger. (That probably sounds odd to anyone outside the MG world!)

The visit summary, however, painted a different picture, suggesting I no longer had MG, but should — ironically — continue my treatment for it. So, I’m not sick, but I still need the medication?

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Previously, I had to travel over three hours to see a neuromuscular neurologist who was seronegative-friendly. He looked at my medical records and said, “Of course you have MG, what else could it be?” We ruled out everything else under the sun, and he said if it walks like a duck and quacks like a duck? Well, I’m a duck.

This provider also felt I should have a neurologist closer to home, in case of a medical emergency. Wanting to be a compliant patient, I followed the recommendation and sought another neurologist.

But then I found myself with a variety of mismatched labels: seronegative/antibody-negative, remission, well-managed, misdiagnosed, mild. It’s enough to confuse any patient. Where did I belong?

I suddenly felt like I wasn’t worthy enough to take my medicine. What a wimp I must be. I felt like I should boot myself out of patient forums and support groups because I didn’t deserve support. My thoughts spiraled, fueled by years of medical gaslighting.

Then my weak waddle would show up — that undeniable heavy-legged gait. Or I’d break another dish because my arm didn’t clear the sink (again). Or that scary shortness of breath monster would return to sit on my chest. So I’d kick myself for falling for impostor syndrome, take my medicine, and listen to my body.

There are a lot of labels tossed at those of us in the MG community. Ocular, generalized, bulbar, seropositive, seronegative, mild or severe, and the list goes on. While these definitions are useful in directing care, I had to remind myself to leave the labels in the exam room.

A label of “mild” or “in remission,” in my case, wasn’t some magical force field that stopped weakness from attacking my muscles. Bulbar MG isn’t better or worse than ocular MG. Seropositive isn’t more meaningful than seronegative.

I encourage all of us with MG to listen to our bodies, trust our guts, and fight against the urge to shrink ourselves into the boxes we’re crammed into. We can rebel against our inner thoughts that we shouldn’t speak up or seek care because others “have it worse.” While I feel tremendously blessed to have a “mild” form of MG, I can also confidently say that all MG patients deserve care, not just the most extreme cases.

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