Columns

It can be difficult being friends with someone who is chronically ill. They often have to cancel on you, or they might be exhausted at the start of an event and practically have to be carried out at the end. You may not know what to say to them…

When I underwent a stem cell transplant at the beginning of the year, I was given a 40 percent chance of survival — not just for the procedure to work, but for me to live through it and the recovery. I am still in that “recovery stage,” but I…

It is my birthday this month, and I could not be more excited. I am one of those people who cannot sleep the night before their birthday and will wake up excitedly at 4 a.m. I do dread the thought of being sung to — because I never quite know…

I don’t know about you, but whenever something bad happens in my life, I ask, “Why me?” I don’t want to accept what has happened, so I think it must be the result of something I have done that warrants punishment. I used to think that everything happened because of something…

Many things change when the symptoms of myasthenia gravis (MG) start piling onto each other. I become physically weaker, mentally slower, and spiritually drained. I must spend my energy wisely, which means that sometimes I have to give up doing something fun so that I can do an everyday task,…

Recently, I attended an event that reminded me of the importance of speaking up, letting others into your world, and starting a conversation to create awareness. The event was organized by the South African nonprofit organization Tell, which stands for “Transplant Education for Living Legacies.” It aims to encourage…

Hearing the words “you have a rare disease” is not something you ever expect. Nor is it anything you could ever really prepare for. But unfortunately, it does happen — and it may have happened to you if you are reading this. Going to a general practitioner when you have…

As a part of the rare disease community, I interact with many people who have unique differences to what society deems “normal.” They may have ports or permcaths, feeding tubes or nasogastric tubes. Perhaps they are in a wheelchair or walk with a limp. They may have…

Living with myasthenia gravis means living in a constant state of doubt from myself and others. Fighting an invisible illness has taken a toll on my sanity. I have both good and bad days. My health constantly fluctuates, and so does the perception of my disease’s severity. On…

Last weekend, I was lucky enough to attend an Ed Sheeran concert. Passenger opened for him, and I danced the night away, smiling so much that my cheeks got sore. I have been to concerts before, but never any quite like that one. It was a long day, but luckily,…