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Myasthenia gravis (MG) is nothing short of fickle. We are unwelcome companions, thrust into its foibles and constrained by its unpredictable nature.  Subsequently, MG has made my life an uncertain seesaw. In the blink of an eye, I have danced near death, and in the next, I’m seemingly…

Hospital visits that end up going less than smoothly either make or break your spirit. Physical strength comes and goes in the lives of the chronically ill, but it’s our emotional toughness that gives us that mind-boggling endurance no healthy person can seem to comprehend. It is almost like a…

My husband and I have a cat and two dogs because I believe no home is complete without pets to love. Our animals sleep in our bed and come along on family trips — they are our “fur-children.” As my health has declined, I’ve come to see these pets as…

Life is filled with the impatient burden of waiting as we eagerly look toward important milestones, big events, and even the outcomes of the unexpected — both good and bad. And while we can be restless as we keep our eyes on the horizon, these measured moments of waiting…

If I wear a high-cut top or a scarf, you won’t see the 15-cm (almost 6-inch) line plunging from my neck to my cleavage. The scar is a big giveaway that I am not a medically stable person. One of the reasons I don’t feel very self-conscious about my…

Myasthenics adjusting to reduced physical abilities must make lifestyle adaptations. To ensure the continuation of my tertiary studies, I’ve acquired disabled parking on campus. Applying for the placard dented my pride. I struggled for months before finally admitting to needing disabled parking. I could no longer walk the distance from…

What do you do when told there is a treatment that could put you into remission, but your health insurance denies it because there “isn’t enough clinical evidence”? There will never be enough clinical evidence for my rare disease because there are not enough people affected by the condition to make…

Wondering about the reasons behind life-changing moments is only natural. It is normal to guess what your part in your eventual fate was, but sometimes things cannot be understood so simply. And that is almost more frustrating than the actual reason behind most things in life. My myasthenia gravis…

This past week, I was lucky enough to attend the RareX 2018 Conference organized by Rare Diseases South Africa. It was a chance for healthcare professionals, support groups, and patients to meet up, interact, and attend really interesting lectures. I knew it would be a worthwhile event, but…

Nothing has ever made me feel more alone in this world than lying awake in my hospital bed at night. Myasthenia gravis patients are not allowed sleeping tablets because they could be fatal. So, I will often lie in my hospital bed at night for hours. When that happens, I…