Allison's story

I was diagnosed with myasthenia gravis (MG) when I was five years old. I don't remember much about the day itself. My strongest memory is going to the store afterwards and getting a new doll. My parents shielded me from what must have been a frightening time for them. Years later, they told me that one of their first questions was whether the disease could be fatal.

Growing up, MG was simply part of my life. My parents never let it become the thing that defined me. They taught me that while I would have to live with MG, I still had to put one foot in front of the other. Going to higher education and building a career were always expected of me, and I'm incredibly thankful for that.

Today, I love football, travelling, cooking, spending time by the water and bringing the people I love together. Every year I host parties for my friends, and maintaining those relationships is incredibly important to me. But behind those everyday moments is a side of my life that other people don't necessarily see.

MG is often unpredictable. One day I can wake up feeling great and have a busy, productive day, and the next, my eyelids may droop or my neck can become extremely fatigued. Even something as ordinary as blow drying my hair can require breaks because holding a hairdryer above my head becomes difficult.

I've learnt to make adaptations. I have my groceries delivered so I don't have to use precious energy pushing a heavy cart and carrying bags. When I travel, I sometimes use wheelchair assistance, pre-board flights or take a taxi directly to the airport. At first, I felt embarrassed about needing that support, but now I recognize that conserving my energy allows me to be more fully myself when I arrive.

Perhaps one of the hardest things is that so much of this is invisible. I can be at a supper club or book club, talking and socializing like anybody else. But when I go home, I strap on a non-invasive ventilator that I need to sleep safely. Someone meeting me socially would never know that part of my life exists.

Living day in and day out with a rare, chronic and often invisible illness can wear you down. For me, gratitude, humour and the people around me have helped enormously. My family and friends have driven me to appointments, brought meals when I've been unwell and stepped in whenever I've needed them.

My own experiences eventually led me to advocacy. What started with organizing an MG awareness walk became my career, and today I serve as Executive Director of the Myasthenia Gravis Association. Through meeting so many others with MG, I've learnt that no two experiences are the same.

Above all, I want people to see the individual before the diagnosis. MG is part of my story, but it isn't the whole story.