Columns

Why I Am Not ‘Just Tired’

Sleeping is necessary to keep your body functional. Once deprived of it, you learn just how important sleep is to behave how you want to behave. Without it, you stray from your desired character. With myasthenia gravis, sleeping becomes as important as honey is to a bee. My…

Holidays, Planes, Trains, and Myasthenia Gravis

Traveling can be an anxiety-provoking experience. There are so many things to remember, including those that are necessary to board the plane. I recently embarked on a trip to Europe, which is quite the distance from South Africa, and learned many valuable lessons. The first thing I learned is the…

Life with a Suppressed Immune System

Finding a viable treatment option for a rare disease can be a long-term, frustrating struggle. Being rare, the disease itself is often poorly understood by the medical community, making it even more difficult to treat. Myasthenia gravis is an autoimmune disease, which means the immune system attacks healthy tissue —…

Myasthenia Gravis Taught Me Not to Judge So Harshly

If I have learned one thing from life, it is that people always pass judgment. We judge things we think we understand, and sometimes we judge things we don’t even want to understand. I judged myasthenia gravis as a disease that can easily be treated and thought it wouldn’t…

Managing University Life with MG

Life with myasthenia gravis can be incredibly frustrating. At times, it feels like no one understands my battle and what I’m forced to go through just to lead a functional life. This frustration is especially emphasized when I attempt things that my peers do with a whole lot less effort,…

Shedding Expectations While Living with Myasthenia Gravis

In the years since my diagnosis of a rare, incurable disease, I have learned about unspoken rules that have been thrust upon me and the social expectations that quickly follow.  Whether intentionally or not, there is a subtle, yet real, desire by others to see my health journey end…

Why I Am Not ‘Better’

When I see someone for the first time in a while, they sometimes ask me if I am better. I have to pause before answering. Being chronically ill means that this is a long-term condition and that I may never be “better.” A chronic condition is a disorder or disease that…

Finding Grace When MG Changes Our Plans

The house is quiet past midnight, yet I’m fully awake as usual, thanks to my many health issues. Nighttime is when everything comes alive for me — chiefly my pain and other symptoms, but also my creativity and visions for the MG community, my plans for the next day, and…

Answering the Invitation to Simply ‘Be’

Having a rare disease opens the door to many questions. It also presents the opportunity for well-meant advice that doesn’t always help the way it’s intended.  I get it — when you hear about someone’s struggles, you want to jump in and help fix them any way you can.