Unseen Battles: Advocacy and Community in the Face of Myasthenia Gravis

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Anaya, a young woman with myasthenia gravis, discusses her challenges and triumphs living with a rare disease. She shares her personal story of advocacy and community, finding strength in the disease's impact on her independence and identity.

Anaya Mitchell  (credit: LinkedIn)

Anaya Mitchell

(credit: LinkedIn)

When I was 12, I was heavily involved in sports, playing both basketball and softball. One day, during a basketball game, I fell and couldn’t get back up, prompting my dad to rush over from the bench to try to lift me. It was surprising and scary, as if my legs no longer worked. The weakness in my legs persisted over the next 6 months. Later, during a softball game, my legs gave out completely. That’s when my parents knew it was time to see a doctor.

I visited multiple doctors who initially thought my symptoms were due to stress or seizures. Finally, a year after my symptoms began, I received a diagnosis from a third doctor: myasthenia gravis (MG). This rare autoimmune disorder disrupts communication between nerves and voluntary muscles that can impact movement, facial expressions, speaking, and swallowing. There are approximately 65,000 people in the US living with this disease.1

The period following my diagnosis was one of the most challenging times in my life. MG stripped away my independence, making everyday tasks like walking or eating difficult. While most teenagers were discovering themselves, I was focused on surviving each day. Despite the odds, I managed to get through high school with significant adjustments. Although I became isolated, it ignited a strong desire to advocate for others facing similar battles.

Today at age 24, I’m in remission, functioning at about 80-85% of my full capacity. This new normal brings relief but also serves as a constant reminder of my condition.

One of its most challenging aspects of MG is its invisibility. People often assume I’m healthy because of my age and because I don’t “look” disabled. So, I am frequently faced with having to explain and advocate for a condition many have never heard of. As a young, plus-size queer Black woman, my experience is further complicated by societal expectations to “overcome” and not show weakness, alongside biases related to my identity. My strength is commonly seen as inspirational, which is intended as praise but feels frustrating to me. I didn’t have a choice but to survive and adapt.

Community is at the core of my identity. My experience of isolation with MG has driven me to seek and build community wherever I go, including in my career. I currently work as a Community Relations Fellow for Donor Gift of Life while being an advocate for other young people living with MG. Drawing from my journey, I promote organ donation and defy myths within Black and Brown communities. The roles I play in community relations and advocacy serve as pathways to connect with and educate others. Like me, I encourage others to also find their support networks.

Reflecting on my journey, MG is a significant part of my story, but it doesn’t define me entirely. I have learned to listen to my body and now understand the power of invisible strength. My experiences have deepened my empathy and fueled my commitment to raise awareness and advocate for those who have yet to find their voice, as I continue to navigate my own path to self-discovery. I’m proud of the person I’ve become —a testament to enduring and thriving despite the challenges MG has presented.

REFERENCES
1. Gilhus NE, Skeie GO, Romi F, Lazaridis K, Zisimopoulou P, Tzartos S. Myasthenia gravis - autoantibody characteristics and their implications for therapy. Nat Rev Neurol. 2016;12(5):259-268. doi:10.1038/nrneurol.2016.44

Anaya is a native of New Jersey, currently living in Pennsylvania after completing a marketing degree at Drexel University. She now focuses her time on advocacy for others with MG and other young people affected by rare conditions. Anaya hopes to one day create community spaces for people who lack the support she had when diagnosed.

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