What not to do when living with myasthenia gravis

While staying at home and resting are a go-to piece of advice when living with myasthenia gravis (MG), I’ve always loved challenging that idea and trying to live life to the fullest.

But what are the real limitations imposed by MG? What’s the list of things to never do that every MG patient should keep in mind?

After a modest 18 years of this disease running through my veins, playing on my nerves, and creeping its way under my skin every single day, I’ve learned the hard way that pretending it doesn’t exist will lead to nowhere but disaster.

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The following is my personal guide of what not to do. This, of course, is based on my own personal experiences.

1. Never talk about it the first time you meet someone

You might expect me to start with physical or medical advice, but this is honestly the best thing I’ve implemented.

When I was diagnosed, I was almost relieved to finally have a name for what I was going through. I truly believed people wouldn’t be judgmental and would be understanding. To be fair, they are, but timing matters.

As much as MG impacts my life, it doesn’t define my personality. But I realized that when I mention it too early after meeting someone, people start walking on eggshells around me. The dynamic shifts before they even get to know me.

However, when people first experience who I am — my energy, humor, and way of thinking — and then learn about MG, everything feels more natural. They ask questions more freely and without fear, and the conversation becomes seamless instead of heavy.

2. Never rely on rest alone

Everyone will tell you to rest, to avoid overexerting yourself, and to slow down. Yes, rest is important. But relying on rest alone? That never helped me.

What truly made a difference was gentle stretching, eating better, and very slowly pushing my limits through small daily wins.

It’s not about doing more; it’s about not becoming passive. Because the more you stay on your couch, the easier it is to feel stuck — and to feel sorry for yourself.

Meanwhile, from that same couch, you could read something that shifts your mindset, create content to advocate for your cause, or at the very least, peel some vegetables to snack on later. (Not the most glamorous image, I know. But you get it.)

3. Don’t focus only on one solution

You might try yoga and feel like you’re floating. You might meet a practitioner whose hands feel like magic. Trust me, I love alternative healing approaches. But putting all your hope into one solution is a trap.

The body adapts, and quickly. What works today might feel less effective tomorrow. And when that happens, it can feel discouraging, like you’re back to square one.

The key is balance.

Mix approaches, stay curious, and keep exploring. Healing isn’t about a single path; it’s a combination of things.

4. Don’t force it

Motivation is a blessing. But being blindly driven by it? That’s where things can go wrong.

I get excited easily when I try new things. I want to do more, go further, and push harder. But every single time I ignore my body’s signals, every time I go past that “this is too much” warning, I end up paying for it. And not lightly.

Sometimes that means ending the day curled up, completely drained, and relying on my respiratory machine just to get through the night.

So, yes, push gently, but never force it, even when it’s tempting. Especially when it’s tempting.

That’s my “don’t do” guide for now. The truth is, living with MG is a constant learning process. What works today might shift tomorrow, and every phase teaches you something new about your body, your limits, and your strength. And I’m sure I still have a lot more to learn.

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.