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Myasthenia Gravis: Over 30 Years of an Invisible Journey

  • Zuo Ann
  • Jun 24
  • 3 min read

June is Myasthenia Gravis (MG) Awareness Month, and this year marks over 30 years since I was diagnosed with this rare, invisible illness.

At 19, just as I was stepping into the next chapter of life, I suddenly lost control over my muscles. Everything changed overnight — my future clouded by fear, confusion, and questions no one could answer. Back then, there were no online resources, no support groups — just a lonely process of navigating symptoms, doctors, and the unknown. In 2021, I shared my story of despair and transformation — how MG led to vision loss, painful surgeries, emotional collapse, and even a silent suicide attempt. But I also wrote about the turning point: discovering Nichiren Buddhism and the guidance of a mentor who helped me shift from asking “Why me?” to “What can I do with this life?”


From "Why Me?" to "What Can I Do?"


Since then, I have learned how to live with pain instead of constantly fighting it. When the waves of weakness come, I quietly remind myself, “This too shall pass.” I still cry, but now I know how to comfort myself — to breathe, to wait, and to believe in tomorrow.

I have come to understand my body better — learning when to push and when to pause. I no longer ignore its signals. Resting is not giving up, it is a form of care for what my body needs in order to keep going. And choosing to acknowledge or accept my condition is not weakness or resignation. It takes courage to face reality and still move forward with hope.

The journey has not become easier. New challenges continue to appear — fluctuating symptoms, worsening vision, and new chronic conditions. There are still days when dark thoughts creep in, and I face many of these fierce struggles alone — physically and emotionally. But thanks to the selfless support of my family, the care of good friends, the encouragement of comrades in faith, and guidance from my mentor, I have been pulled back from the edge time and time again.

Over time, I have grown more understanding even toward those who can’t see or accept my condition. Because MG and vision impairment are invisible, I have met with harsh remarks like “Are you blind?”, “Why are you so pampered?” or the judgment in people’s eyes when I made a mistake. It hurts — but I remind myself that not everyone can grasp what they don’t experience. So instead of resentment, I choose compassion. This is also part of my journey — to face misunderstanding with grace. My Ongoing Journey: Hope and Perseverance Though MG and other conditions slow me down, it has not stopped me from dreaming. I still have goals. They may take longer to reach, but I will get there. Step by step, in my own time. That’s what perseverance looks like now.

During my hardest years, I wrote this poem — a reflection of my pain, and ultimately, my transformation:

“A Curse” Fiery lightning pierced my sky,

a rare disease married me

without consent.

My bones softened,

my lungs caved,

and my tears begged for freedom.

But from the ruins,

a whisper:

Manifest the hidden sun.

Slowly,

even the tyrant transformed.

What once felt like a curse became part of how I learned to grow, choose hope and courage, and to shine again.

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