Learning the rhythm of pacing myself with myasthenia gravis

Living with myasthenia gravis (MG) means learning to coexist with a body that doesn’t always follow predictable rules. One minute I feel steady, capable, and even hunky-dory. The next, my muscles wave a white flag, and the simplest task feels like climbing a mountain in wet boots. That unpredictability is one of the hardest parts of MG, and it’s exactly why pacing is not just a helpful tip. It’s survival.

When I was diagnosed, I thought pacing simply meant slowing down. Rest more. Do less. Avoid pushing myself too hard. That advice wasn’t wrong, but it wasn’t complete either. Pacing with MG is more nuanced. It’s about listening closely, adjusting constantly, and creating a rhythm that lets me participate in life without paying for it later with a full-body crash. It’s learning how to live inside a body that can change its mind minute to minute.

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When ‘fine’ has an expiration date

People often ask how I’m doing, and like many of us with chronic illness, I answer, “I’m fine.” The thing is, “fine” with MG comes with an expiration date. I might genuinely feel OK at 9 a.m., but by noon, my eyelids droop, my speech starts to slur, and my legs feel like they’re filled with cement. That doesn’t mean I was exaggerating earlier. It means MG shifted the goalposts.

Pacing has taught me to respect that reality instead of fighting it. I try to schedule my most demanding tasks during the small window when my strength is at its peak. I leave space before and after for rest, because I’ve learned the hard way that pushing straight through is a fast track to a flare. Pacing doesn’t mean giving up on productivity. It means being realistic about when my body is most likely to cooperate.

It also means letting go of the guilt that creeps in when plans change. Canceling, rescheduling, or stopping halfway through something isn’t a moral failure. It’s a response to a neuromuscular disease that thrives on unpredictability. The more I accept that, the less power MG has over my mental health.

Saving energy, protecting joy

For a long time, I resisted using tools that could make life easier. Mobility aids, adaptive devices, even small accommodations felt like giving in. I worried that once I started using them, I wouldn’t stop. What pacing eventually taught me is that tools are not a sign of weakness. They are a way to conserve energy for the things that actually matter.

A cane, a cooling vest, or an adaptive setup in my home doesn’t mean I’ve quit. It means I’m choosing where my limited energy goes. Instead of wasting it just trying to get through the day, I can spend it on connection, creativity, or simply feeling more like myself. That shift in mindset was freeing.

Pacing also isn’t only about symptom management. It’s about protecting joy. Chronic illness has a way of shrinking your world if you let it. For me, hobbies like swimming, crochet, or photography offer mental resilience when my body refuses to cooperate. They remind me that life with MG isn’t only about what I can’t do. By weaving moments of joy into my pacing plan, I create balance. Physical rest paired with emotional nourishment makes the whole thing sustainable.

There’s always a temptation to push harder on good days. Sometimes that push is necessary. It helps me test limits, reclaim strength, and feel alive in my own tush-kicking way. But pacing means pairing every push with recovery. It means giving myself grace instead of punishment when my body taps out early. Grace isn’t weakness. It’s wisdom earned through experience.

Without pacing, MG runs the show. Fatigue deepens, symptoms spiral, and recovery takes longer than it should. With pacing, I regain some control. I can plan, adapt, and participate in life on my own terms. Pacing doesn’t cure MG, but it makes living with it sustainable. That difference matters.

So when you hear “pace yourself” in the context of MG, don’t think of slowing down or shrinking your life. Think of learning your rhythm. Think of living smarter, not harder. That’s the real work of living with MG, and it’s worth every adjustment.

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.