Don’t let fear hold you back from living with MG

Deborah skydives over Longmont, Colorado. (Photos courtesy of Deborah White)

This is Deborah White’s story:

After several months of sporadic double vision, I started to experience drooping eyelids while on a business trip. A concerned co-worker took me to the emergency room where the physician recommended that I see a neurologist back home right away. He took my mobile phone, Googled “myasthenia gravis,” and handed the phone back to me. “I think you have this,” he told me.

As I read the information on my screen, disbelief and panic set in. “How can this be? I’ve always been so healthy,” I thought.

One month later, I received a diagnosis of MuSK-MG. By this time, I had researched and read enough to be devastated and terrified by this diagnosis. I stopped going to my kickboxing gym for fear that a strenuous workout would cause a new symptom. I postponed a summer visit to family in the humid South until the cool weather of fall. I reconsidered my plans to move to a home without a first-floor bedroom. Every single day, I lived in fear of triggering a flare.

And then? Nothing happened. The double vision and drooping eyelids went away within two weeks, and I’ve never experienced another symptom. I’ve never taken any medication. I’ve never received any kind of treatment. I just see my neurologist once a year.

Deborah hikes with her dog, Lucy, at Heart Lake Trail near Nederland, Colorado.

I know how incredibly fortunate I am, and how rare my story is, especially for someone with MuSK-MG. Every day when I read others’ MG stories in online community chats, I feel an odd combination of survivor’s guilt and the self-doubt that comes with impostor syndrome. My heart breaks for those experiencing the true toll of MG, and at the same time, I feel any words of wisdom or encouragement from me would ring hollow.

For this reason, I’ve been hesitant to share my MG story, but I believe it’s an important story to share, especially with anyone newly diagnosed. It’s an MG story of hope for a less frightening prognosis and a lesson to not let fear hold you back from living.

While I continue to take precautions to lessen the possibility of a flare, I no longer let the fear of a trigger rule my life. I’m back to kickboxing and just spent a week in the sweltering heat of North Carolina. We talk of MG as a snowflake disease, and for now, my snowflake has fallen gently, landing softly on a drift in the moonlight and reminding me to be grateful always.

In recognition of Myasthenia Gravis Awareness Month in May, the MG Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by MG, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #MGSpotlight, or read the full series.