Choose Your Language:
Posted by: The Sumaira Foundation in Myasthenia Gravis (MG), Patient, Voices of NMO
As a miler ranked at the top of the 13 to 14 age group on the West Coast, I understood the “burning language” of muscle fatigue. I knew the sting of lactic acid. To me, that burn was a friend and a sign of progress. It meant I was pushing the boundaries of my own potential.
In early 2023, that dialogue changed. The weight of the water shifted from something I could push against to something that was crushing me. This was not the familiar exhaustion of a hard set… It was a mechanical failure.
My brain would send the signal to pull, but it felt as if the wire had been cut. It was a shutter closing. I was not out of breath; I was out of connection. During one meet, my strength failed so completely that I could not pull myself out of the pool. I had to wait for my teammates to reach down and haul me onto the deck like lead.
There is a specific kind of loneliness in being a fifteen year old girl holding a pulse oximeter that says you are suffocating, while a man in a white coat looks at your GPA and tells you to breathe through the stress. My oxygen levels were recorded at 80 percent, yet because I was a high achiever, my symptoms were dismissed as a performance of anxiety. They treated my ambition like a pathology.
As the weeks passed, the illness began to take more than just my speed. It took my ability to communicate joy. The mirror became a stranger. I would pull at the corners of my mouth, trying to coach a smile into existence, but my muscles refused to hold the shape. This is what MG patients often call the “myasthenic snarl.” My face would collapse when I laughed, leaving friends to ask why I was crying. I was losing my place in the pool, but more importantly, I was losing the ability to look like myself.
The ambiguity finally ended on October 2, 2023. After months of being told the problem was in my head, a neurologist confirmed it was in my synapses. I was diagnosed with AChR-positive Myasthenia Gravis. MG is a rare autoimmune condition where the immune system interrupts the vital communication between nerves and muscles.
The diagnosis was a moment of profound clarity.
The weight was finally lifted from my shoulders because I finally had a name for the weight in my limbs. I was not anxious or overtrained. I was ill. I traded the chaos of the unknown for a strategic medical protocol: a thymectomy, high dose steroids, and IVIG infusions. I had to learn to be patient with a body that was rebuilding itself from the cellular level.
I share my story through The Sumaira Foundation because visibility is a form of justice. No young athlete should have their physical collapse rewritten as a mental breakdown. I now carry the weight of my voice with the same discipline I once used to carry the weight of my training. Myasthenia Gravis changed my trajectory, but it clarified my purpose. I am still a swimmer, still a student, and now, an advocate for every patient still fighting to be heard.
