Columns

Writing this column is the best job I’ve ever had. It gives me the chance to cry my heart out every week about a situation that nobody around me truly understands. I can have a peaceful exchange with complete strangers about a chronic problem we have in common: myasthenia…

I’m sitting in an infusion chair with saline slowly dripping into my veins after getting a dose of iron, and all I can think is that I spent a full year blaming myasthenia gravis (MG) for this level of exhaustion. For an entire year, I dragged myself through days…

I’ve watched movies about many medical conditions. Cinema has explored dramatic accidents, disabilities, and illnesses in beautiful and heartbreaking ways, helping to raise awareness and show how different perspectives can exist around the same struggle. We see the experience of the ill person, but also of their loved ones, their…

For those of us living with myasthenia gravis (MG), the burden isn’t confined to the body. It relentlessly finds its way into the wallets of those who live with it. Checkbooks, retirement accounts, pensions, and daily expenses are all affected and often determine whether one lives with dignity. In…

Some days, living with myasthenia gravis (MG) feels less like managing a medical condition and more like trying to negotiate with a very moody landlord. That landlord owns the building you live in, the body you move in, and the energy you rely on, and they change the terms…

Understanding someone involves so much more than knowledge. I have been learning about myasthenia gravis (MG) and its symptoms over the years, but I don’t know if it’s brought me any closer to understanding my twin, Aaron. MG completely altered his personal life and ended his work life. I…

You should rest. You should sleep. You should take care of yourself. Lose weight. Don’t run. Don’t complain. It’s all in your head. You can fight it. These are comments I often hear from friends, family, and loved ones, and honestly, they are not helping. I know people mean well,…

We are told that stress, inadequate sleep, poor eating habits, and the lack of an effective medication protocol can contribute to flare-ups of myasthenia gravis (MG). Sleep, at least in theory, is manageable. We can adjust routines, sneak in naps, and pretend that going to bed at 9:30 p.m.

Note: This column describes the author’s own experiences with Mestinon (pyridostigmine bromide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. There’s a kind of math you learn to do when you live with myasthenia gravis (MG). It’s a quiet,…

My sister has been accomplishing incredible marathons and runs ever since the two of us failed a running attempt during an event with our yoga club. I can’t help but feel both proud and jealous of her accomplishment, but it hurts even more when I tell people I was there,…