The weight of being an MG advocate: Why rest is as vital as your voice

There’s a part of myasthenia gravis (MG) that people rarely talk about, and it’s not the symptoms, the appointments, or the medications. It’s the sheer weight of having to advocate for yourself over and over and over.

Advocacy may sound noble, but from an insider perspective, it can feel like having another full‑time job layered on top of a body that already demands more than most people will ever have to give. It requires emotional labor to translate one’s lived experience into something others can easily understand, even when the advocate is barely holding it together. It’s the quiet truth that sometimes, even when you know your voice matters, you’re too tired to use it.

There will be days when you want to be done with all of it — the explaining, the correcting, the advocating, the endless work of translating. There will be days when the idea of fighting one more battle feels impossible, and the thought of pushing back, speaking up, or educating someone again makes your whole spirit sag. There will be days when you look at the reality of living in a body that is always at war with itself and think, “Why am I still doing this?”

There’s no shame in that. Advocacy on top of survival is exhausting, and anyone who pretends otherwise has never had to live inside a body that demands this much.

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There are days, weeks, months, and even years when it doesn’t seem worth it. When the status quo feels easier than the fight, and throwing in the towel feels like the only sane option. When silence feels like self‑preservation, not surrender. And sometimes, for a while, it is.

But what keeps me going, even on the days when I want to disappear into the quiet, is this: You never know how your actions will affect the people who come behind you. You never know which moment of courage — even the small, tired ones — will be the reason a care provider starts thinking differently, keeping up to date with research, or questioning their assumptions instead of their patients. You never know when your voice will be the one that shifts something, even if the shift doesn’t come in time to help you.

Sometimes advocacy is selfish, like the kind you do because you want to live, you want answers, and you want relief. Sometimes it’s selfless — the kind you do because you know someone else might benefit from a door you managed to pry open. Most days, it’s both.

Better ways to advocate

What I’ve learned is that sustainable advocacy isn’t about being loud all the time. It’s about knowing when your voice is needed and when your energy is better spent elsewhere. It’s about recognizing that rest is not a retreat from the work; rather, it’s part of the work. It’s about understanding that you don’t have to fight every battle to be an advocate — you just have to choose the ones that matter most to you. And it’s about giving yourself permission to step back without guilt when your body or spirit asks for quiet.

Some days, advocacy looks like speaking up. Some days, it looks like walking away. Some days, it looks like resting so you can speak again tomorrow. All of it counts.

The longer I live with MG, the more I understand that advocacy isn’t a performance; it’s a practice. It’s imperfect, uneven, and deeply human. It’s shaped by the days when you’re strong enough to push and the days when you’re not. It’s held together by the quiet hope that even if the system doesn’t change fast enough for you, maybe it will change for someone else.

I don’t speak up because I enjoy it. I do it because I have to. I advocate because my life depends on it, and because somewhere out there, someone will walk into a clinic years from now and be met with a provider who thinks differently because a patient like me refused to disappear.

That’s enough to keep me going, even on the days when I want to quit. It’s enough to remind me that my voice still matters, even when it’s tired. And it’s enough to help me believe that advocacy — in all its messy, exhausting, and imperfect forms — is still worth it.

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.