The tug-of-war between my independence and his caregiving

After every major flare of myasthenia gravis (MG), there comes a stretch of time that feels like limbo. I call it the “gray zone” of healing.

It’s that place between being actively sick and feeling recovered enough to do my version of normal things, the things I could do before spending a week in the critical care unit. But let me tell you, this “gray zone” stage? It messes with my head.

I get tired of the word “recovery.” It implies there’s an end, a destination, a finish line where someone hands me a medal and says, “Congratulations! You’re all better now!” But MG doesn’t work that way, does it? We have baselines and setbacks, good days and couch-bound days, and sometimes we’re rebuilding from the ground up with leg muscles that feel like jelly and voices that vanish mid-sentence.

Now add in a loving, fiercely protective husband who’s been through the flare (and other health issues) right alongside me, and who’s terrified that I’ll push myself too soon and end up back in the emergency room. That’s where this gets tricky.

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Living with the healing process

From his side of the equation, I totally get it. He’s seen the worst of it: my body trembling, my breath shallow, the blank stare when my muscles just … stop. Of course he wants to help. Of course he’s watching me like a hawk when I sleep too much, reach for the laundry basket, or try to sweep the stairs (which, let’s be honest, I probably shouldn’t be doing even on my best day).

But from my side? I feel smothered, coddled, like my independence is this delicate ornament everyone wants to cover with Bubble Wrap and stick on the shelf until I’m “safe” again. And maybe that’s love. Maybe that’s what caregiving looks like when the fear of losing someone outweighs the willingness to let them try to do things on their own.

Regardless of intention, it stings and usually pisses me off.

Here’s where I’ve landed on it — for now, at least. Recovery is not a straight line. It’s a dance. Sometimes I lead. Sometimes MG leads. And sometimes, my husband and I are stepping on each other’s toes trying to figure out who gets to call the next move.

The challenge is in deciding when the concern is rooted in reality, and when it’s fear holding both of us hostage.

There’s a moment in every recovery phase where I have to test the waters. Can I walk the loop of our driveway without needing a break? Can I cook dinner for my family? Can I spend the day I’d normally have pre-flare without collapsing by 3 p.m.? And yes, sometimes I overdo it. But how else do I figure out where the line is now?

I’m not the same person after every flare. MG has this sneaky way of rearranging my stamina, my strength, and my limits every time it knocks me down. So of course I want to know where my new “normal” is.

The hard part is learning how to reclaim my independence without bulldozing over my husband’s very real worries. It’s a constant back and forth. Most days we nail it. Other days we get frustrated and snippy with each other because I dared to lift something heavier than a pillow.

If you’re living with MG — or loving someone who is — you probably know this dance, too. The fear. The hope. The frustration. The sheer exhaustion of renegotiating what living our day-to-day life looks like after every setback.

How I’m handling it

So here’s what we’re learning:

It’s important that we check in with each other, often. Not just about how I’m feeling physically, but how he’s feeling emotionally. His fear is valid, even if it sometimes drives me up a wall.

I try to set small independence goals. I started by picking up a grocery order that I placed online. That one task gave me a little piece of myself back.

We do our best to give each other grace. We’re both figuring out this new reality as we go. He’s not trying to control me. He’s trying to keep me here.

I may not be able to define exactly when I go from “recovering” to “recovered.” But I do know this: I am not broken. I am not fragile. I am not someone who needs to be covered with Bubble Wrap. I am learning, adapting, and reclaiming my life in small, brave ways.

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.