3 analogies to explain what it’s like living with myasthenia gravis

I admit it. I’m a nerd. I like the science gobbledygook. I thoroughly enjoy digging into the PubMed catalog of biomedical articles, part of the National Center for Biotechnology Information.

But even I can admit that when I tried to explain the science behind how myasthenia gravis (MG) affects my body, eyes glazed over and people stopped listening. What’s the point of using precious breath and energy to explain my day when I can’t even get past the eye glaze?

That’s when I enlisted my husband’s help to find analogies that work well to explain how MG affects me, so those who cared to understand could. The collection below is what we came up with. While discussing these analogies, I’ll use “we” or “our” to collectively reference people with MG.

Recommended Reading

March 1, 2024 Columns by Mark Harrington

Living with MG showed me ‘there are worse things’ than time alone

Analogy No. 1

To explain the neuromuscular junction — the site where nerve cells come into contact with muscle cells to coordinate voluntary movements — the image of cars going through a toll plaza quickly became my go to. Typically, the neurotransmitter acetylcholine carries messages to the muscles, telling them to contract. In people without MG, this is like traffic flowing freely through the toll plaza because all lanes are open.

However, as an MG News article notes, “In MG, the body’s immune system erroneously attacks components of the [neuromuscular junction], interfering with nerve-muscle communication and ultimately causing patients to experience fatigue and muscle weakness.” In the analogy of the toll plaza, this might mean that six of eight lanes of traffic are closed in those of us with MG.

Analogy No. 2

In the early stages of diagnosis, it can be difficult to articulate the difference we feel between muscle weakness and fatigue. For me, weakness comes and goes, but fatigue has its own set of rules.

You may have read my dinner plate theory. And while that’s good, I think the broken battery analogy is better for an overall understanding of the fatigue that’s felt.

MG fatigue is like starting the day with a battery that only charges to 50%. Some activities will zap the battery power quicker than others. Taking a shower and getting ready for the day are like keeping your smartphone’s location setting turned on. It may be a necessity depending on the day’s activities, but we know it’s going to zap our battery power twice as fast. Sitting and visiting with friends is like keeping your screen on high brightness while scrolling through social media.

We may sleep for eight, 10, or 12 hours a night; no matter how many hours of good sleep we get, that battery never reaches higher than a 50% charge.

Analogy No. 3

This third analogy is one I use when trying to explain what my breathing difficulties feel like. My accessory muscles and diaphragm are affected. One common differentiation I make before using this analogy is that my breathing difficulty is a result of poor ventilation, not oxygenation.

If we think of our lungs as a balloon and our diaphragm as an accordion-style pump, the difference between the two becomes clearer. The balloon (lung) works fine – there are no holes or anything that affects its ability to hold air. The pump is an outside force (the diaphragm).

When everything works well, when the pump is pressed down, the balloon fills with air. When the force is released from the pump, the pressure releases and the air is expelled from the balloon. If there’s not enough physical exertion to cause that pump to push air into the balloon, than the balloon doesn’t inflate.

When my diaphragm is weak, I’m unable to exert the energy required to make my lungs inflate. I’m admittedly still working on another analogy to better explain these breathing difficulties. Do you have one you’d like to share?

Do you have other ways of explaining MG to your loved ones? I’d love to see them! Please share in the comments below.

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.