How I manage my image to live with myasthenia gravis

I recently made peace with the fact that we almost always judge the book by its cover. It’s just what humans do. We believe what we see. And having a disease that’s not always visible has been the biggest challenge of my life.

I often look just tired enough to not be trusted with a full-time, high-pressure job, but not sick enough to be accepted in priority lines without getting questioned. I know I’m not alone in that, so it got me thinking: Can we control our appearance to make our lives easier?

For me, the biggest challenge of living with myasthenia gravis (MG) is that it’s invisible to others. Some people assume it’s a mild condition that doesn’t especially affect my daily life, while others imagine it’s something as serious as cancer that could take me out at any moment. But for strangers who don’t know me, MG is nothing. Because they can’t see it.

That’s the challenge.

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The glow-up makeup

I used to think that in the professional world, people wouldn’t judge me for my health. But I was wrong. I’ve been underestimated because of the dark circles under my eyes, even when I showed up on time, prepared, and did great work.

I thought my orthopedic shoes wouldn’t affect how “professional” I looked. But apparently, for some people, high heels are still considered a measure of competence.

So eventually, I stopped denying it. Instead of trying to fight people’s perceptions, I decided to play the game. Now, I always wear makeup when I need to be taken seriously. I choose a more “presentable” pair of shoes — nothing with heels, but something that looks clean and professional.

And guess what?

It works.

People take me more seriously. I get treated with more respect. Even when I don’t mention my condition, those small visual clues — my pale face, the tired eyes, the comfort-first fashion — used to betray me. Now that I’ve learned to adjust them a bit, I feel that I’m being treated more like everyone else.

And this rule applies to family gatherings to avoid being asked about uncomfortable topics.

The glow-down makeup

But looking polished doesn’t always help, especially not in situations where I need to be recognized as someone with a medical condition. When I’m at the airport, the hospital, the post office, or even the bank, looking too good can backfire.

It becomes a mental challenge if I try to use the priority line and people don’t “see” why. I’m past the point of caring what people think, but I’m not past the frustration of being shouted at or questioned for something that isn’t visible.

So what do I do?

I prepare myself.

If I know I’m going somewhere where I’ll need to use my priority access, I wear my cervical collar. I’m technically supposed to use it only during flare-ups, but it has spared me from dozens of arguments and uncomfortable moments.

At times, I’ll even wear my ankle brace. It’s not to fake anything; it’s to show people the reality of my invisible condition.
I used to feel guilty about this. I felt as if I were pretending, or exaggerating. But then I realized that I’m not lying. I’m just giving people a picture to help them understand something they might never be able to see.

And honestly, I think more of us should do this.

Awareness about invisible illnesses is still low. And even when people are informed, our human instinct is to believe our eyes before anything else.

So if a neck brace or a support band helps people grasp what I’m going through — even for a moment — it makes life easier for everyone involved.

In the end, it’s not about tricking people. It’s about protecting myself in a world that often doesn’t understand. And if a little visible help can create more peace, fewer questions, and less emotional toll, then that’s the smartest choice I can make.

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.