Columns

For the past two years, pipes have been sticking out of my chest. I have had a port beneath the skin just under my collarbone. Many treatments have caused me to catch numerous infections floating around, so I have had to wear a medical mask when in public. I have experienced…

What is the first thing you do when you wake up? You might have answered, “I take a shower” or “I drink coffee.” However, the first thing everyone does when waking up is to open the eyes. It is a movement so simple that most of us take it for granted…

It has been a while since I have written a column. So much has been happening, but at long last, I am able to sit back on the couch and not immediately pass out from absolute exhaustion. So, I thought it would be a good time to write a little…

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…

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…

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 —…

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…

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,…

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…

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…