Let’s do a quick poll. How many times have you been talking to the curious or well-meaning about how you live with a rare disease and gotten this question: “What does it feel like?”
For many people, it can be hard to put into words what it’s like to live with chronic pain or strange symptoms.
What you might think of as relatively minor discomfort, others could describe as horrific, blinding pain. And if you’re more of a left brain person, you might find it hard to come up with metaphors, similes, and other techniques to “paint” an accurate, representative picture of what you’re feeling.
Fortunately, there are people like Marie Smith who are there to paint those pictures for us.
Marie has myasthenia gravis (MG) and blogs about her experiences at joybenchmarks.com (she apparently plays a mean cello, too). The whole site is worth a look.
In addition to writing about her MG, Marie also discusses her experiences living with diabetes and surviving thymoma cancer—but her post on what MG feels like offers an exceptionally vivid portrait of how muscle weakness affects her.
For non-MG patients, Marie describes a few simple steps for simulating how muscle weakness can impact breathing. I tried it, and I won’t lie: I panicked a little. And I knew I, at least, had the option to stop the experiment.
All in all, Marie gave me a renewed appreciation for the strength of people who go beyond just living with a chronic illness—people who actively put themselves and their experiences out into the open to start conversations, offer support, and make a difference.
Thanks for the reality check, Marie!
