Sometimes, listening to my body means not blaming everything on MG

I’m sitting in an infusion chair with saline slowly dripping into my veins after getting a dose of iron, and all I can think is that I spent a full year blaming myasthenia gravis (MG) for this level of exhaustion. For an entire year, I dragged myself through days that felt like wet cement, assuming it was just another chapter in the “MG is doing MG things” saga.

Spoiler: It wasn’t.

This is the trap no one warns you about. When you live with a chronic illness, especially one as unpredictable and all‑consuming as MG, it becomes the default explanation for everything. Fatigue? MG. Brain fog? MG. Weakness? MG. A weird new symptom that doesn’t fit neatly into any category? Probably MG.

The disease becomes the catch‑all drawer where every discomfort gets tossed, even when something else is quietly waving its hand in the background, trying to get your attention.

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After last year’s crisis, I never fully bounced back. Scratch that — I wasn’t even close. I kept waiting for the upswing, the moment when my stamina would return, the day when I’d wake up and feel like myself again.

Instead, the fatigue deepened. It wasn’t the usual MG heaviness; it was bone‑deep, marrow‑level exhaustion that made even simple tasks feel like uphill climbs. But because MG is already a master of chaos, I shrugged it off. I told myself that this might just be my new normal.

Turns out, what I actually needed was iron.

When my primary care provider checked my labs, my iron and ferritin levels were low enough to concern a vampire. And now, here I am, getting an infusion and feeling equal parts relieved and irritated — relieved that there’s a reason for how awful I’ve felt, irritated that I waited so long to ask the question that should’ve come months earlier: What if this isn’t MG?

That’s the part we don’t talk about enough.

The importance of paying attention

Listening to your body isn’t just about pacing, resting, or adjusting your expectations. It’s also about curiosity. It’s about refusing to normalize suffering just because you’re used to it. It’s about remembering that MG is not the only thing living in your body, and it shouldn’t automatically take the blame for every symptom that shows up.

Fatigue is a perfect example. It’s one of the most common MG symptoms, but it’s also one of the most common symptoms of, well, everything. Low iron, thyroid issues, vitamin deficiencies, sleep disorders, depression, inflammation, infection, and just living life can all cause it. And when you’re already carrying the weight of a chronic illness, it’s easy to dismiss new or worsening symptoms as “just part of the package.”

Sometimes, listening to your body means admitting you don’t know what’s going on, trusting your care team, and asking them to help you figure it out and run a few tests. The surprising part is how empowering it feels to get answers that aren’t just “MG being MG.” There’s a strange kind of relief in discovering that there is actually something else wrong because it means something can be done. It means you’re not imagining it and you were right to pay attention.

And for me, paying attention is part of the bigger picture. It’s part of why I write about this disease, moderate forums, and share my journey. It’s why I say yes to opportunities like speaking at a listening session about living with MG as a veteran and the role burn pit exposure may have played in triggering it. Advocacy takes energy, but it also gives something back. It reminds me that my voice still matters, even on the days when my body is tired.

Listening to your body isn’t just about survival; it’s about agency. It’s about refusing to let MG overshadow everything else. It’s about catching the things that can be treated so you have more capacity for the things that can’t.

So if something feels off, really off, don’t shrug it away. Don’t assume it’s “just MG.” Don’t wait a year like I did.

Your body is talking, just waiting for you to listen. Sometimes it whispers. Sometimes it nudges. And sometimes it drags you into an infusion chair and says, “See? I’ve been trying to tell you.”

And the moment when you finally listen is its own kind of healing.

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.