Living with Myasthenia Gravis: Finding Balance, Rest and Possibility

My name is Frank van der Mast. I am 80 years old and live in Sittard, the Netherlands. I have been living with myasthenia gravis (MG) for almost four years, although I probably had the condition for much longer.

The road to diagnosis

My road to diagnosis was not straightforward. For a long time, I had been diagnosed with COPD, until a new pulmonologist concluded that something else was going on. I was referred to a neurologist and, after more than two years of examinations and second opinions, including at Maastricht University Medical Center, I eventually returned to Zuyderland Medical Center, where I am now under the care of a knowledgeable multidisciplinary team.

The uncertainty that comes with MG

For me, one of the hardest parts of MG is its unpredictability. Some days I can do quite a lot, while on other days even simple activities may require a great deal of energy. Fatigue, muscle weakness, and uncertainty about what my body will allow make planning difficult. I have had to learn to listen carefully to my body, pace my activities and include enough rest.

Coping with rest and self-care

Over the years, I have discovered that calmness, balance, and relaxation are very important in how I cope with MG. I use gentle breathing exercises, relaxation techniques, self-hypnosis and Reiki as complementary practices alongside my regular medical care. These do not cure MG, but they help me slow down, reduce stress, and feel more in control of how I use my energy.

Because these approaches helped me personally, I began collecting simple exercises and ideas in a booklet called “MG & Gentle Support Methods.” It developed gradually over three years, based on my own experience and input from other people living with neuromuscular and chronic conditions. The aim is not to provide medical treatment, but to offer gentle, practical support that people can try at their own pace.

Embracing life with MG

My main message to others with MG is: be kind to yourself. Do not constantly compare yourself with others, or with the person you were before your illness. Instead, ask yourself: What can I still do, and what do I need in order to do it safely and comfortably?

Different things help different people. For some it may be breathing exercises or mindfulness; for others it may be walking, creative activities, contact with peers, or simply allowing more rest. What matters is finding what supports you without pushing beyond your limits.

I also believe strongly in sharing experiences. Living with MG can feel isolating, but connecting with others can bring recognition, ideas, and encouragement. You do not have to do everything alone.

MG may require us to take a different road, but I believe a meaningful life is still possible. Every step counts, however small it may seem.