Don’t tell anyone, but an MG diagnosis gives us superpowers

Stepping out of the phone booth, I put my glasses on and look around to make sure I’m not spotted. I look to the left and then to the right one more time before hobbling into the darkness and blending in with that which is unseen.

What does that remind you of? The blue phone booth of a magical British television show? Or the man in red and blue who is crippled by kryptonite?

Just like these superheroes, we patients have special hidden talents and superpowers that are given to us by chronic illnesses like myasthenia gravis (MG).

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Superpower No. 1: Remaining calm in panic-inducing situations

For me, the best teacher for how to remain calm in scary situations has been having breathing difficulties. When you’re experiencing air hunger and just can’t seem to catch your breath no matter what you do, and accessory muscles have kicked in to help the diaphragm oxygenate your lungs, panic might seem inevitable. But not for us “MGers.”

We grab an ice pack and put it on our back where the diaphragm is. We sleep elevated to promote easier breathing. We take an extra dose of doctor-approved medications. If a BiPAP machine is part of our arsenal, the mask goes on with a sigh.

Then, if these remedies don’t work, an overnight bag is packed while messages to healthcare providers are sent in preparation for a trip to the emergency room and an inevitable hospital admittance. But panic we do not.

Superpower No. 2: Sloth-mode activation

The sloth, with its slow, methodical movement, has become an unofficial mascot for myasthenia gravis because of the similarities in physical behavior. When sloth mode is activated as a preventive measure, we are able to conserve energy and strength so that we can participate in life activities. Sloth mode looks different for each person with MG, but our ability to accept that its activation is a benefit, not a detriment, is a power play.

By engaging in sloth mode, we acknowledge that certain tasks take priority over others in terms of energy expenditure. Date night with the hubby, for example, involves several things: 10 hours of sleep the previous night; time allotted in the morning for meds; a few hours of rest in the morning; a lunch that doesn’t fatigue the bulbar muscles; and more meds in the afternoon. If I want an evening out, I must conserve my energy by limiting activities during the day.

By purposefully engaging sloth mode, limitations are acknowledged and accepted. This acceptance, and the use of adaptive strategies, are the hidden power of sloth mode.

Superpower No. 3: A glass-half-full mentality

We’ve all heard the analogy about a glass being either half full or half empty. For us, when we receive a myasthenia gravis diagnosis, we see only the glass; it’s neither half full nor half empty — it just is.

Yet with a positive mindset and upbeat outlook on life, we can fill our glasses with things that matter. These glasses give us the freedom to live our best lives on our own terms, however that may look.

When diagnosed with a rare disease, it can be difficult to find the positives and avoid falling into chronic darkness and despair.

I’m often asked how I can maintain a positive outlook when achieving the quality of life I have requires so much effort. I can do so because of tricks like this. I have a little bit of fun and reframe what this disease has provided me. And that makes living my best life easier.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.