Living with MG is a journey shaped by resilience, adaptability, and a daily dose of humor in the face of unpredictability. 

Yet, the most surprising part of living with this rare autoimmune condition, which causes sudden bouts of muscle weakness, isn’t the symptoms. It's the way the media shapes my experience, and the understanding (or lack thereof) others have about MG. 

Media can be a powerful bridge that helps society understand health conditions. But for those of us living with MG, the narrative is either absent or wildly inaccurate. This fuels misunderstandings and can create a sense of isolation, leaving us feeling we live in a world that doesn’t quite see us.

Growing up, I remember passing by a bus stop with a public service announcement (PSA) that made me feel uneasy. It was black and white, stark and haunting, with big, bold letters urging, “GIVE US A SMILE.” There was a baby in the image, along with two other individuals, including a man whose face was twisted in a way that looked almost like a snarl. 

I remember thinking, “Why would anyone design an ad like that?” As a kid, I never looked closer to find out what it was really about. I only knew it creeped me out, and I went out of my way to avoid it. 

Years later, after being diagnosed with MG, I stumbled upon that same image in an online article. It turned out that the PSA was meant to raise awareness about MG. I was floored, this unnerving image, which I’d always felt distanced from, was talking about my condition.

Reflecting on that PSA now, I feel it missed the mark. The disturbing portrayal didn’t make people like me, who would one day join the MG community, feel represented, understood, or supported. 

Instead, it positioned us as objects of pity, or fear. 

I realize I’m not the only one who felt unsettled. Friends who saw the same PSA had the same reaction. They thought it was sad or disturbing. None of us came away understanding MG better. We came away avoiding that bus stop. 

And that’s a big problem. Because when an awareness campaign leans on shocking or unsettling imagery, it risks creating stigma rather than understanding. The message gets lost in translation. The only thing people remember is how uncomfortable it makes them.

For many, medical awareness campaigns are their first introduction to rare conditions like MG. And for a condition as hidden and complex as MG, the responsibility of these campaigns to represent it accurately is huge. 

Few people know that MG causes muscle weakness that can fluctuate daily, or that it can affect something as simple as holding up your own head. This lack of familiarity often leads to wild misconceptions, and it’s up to awareness campaigns to bridge that gap in a way that’s respectful, realistic, and, ideally, empowering. 

Seeing a PSA that associates MG with distorted faces or pity rather than resilience doesn’t help. People with MG aren’t scary or pitiful. We’re people living with a challenging condition that deserves understanding, not discomfort.

The impact of accurate representation is personal, too. 

It doesn’t just affect how others perceive us, but it also affects how we perceive ourselves. Seeing our struggles, victories, and humor reflected in the media, portrayed with compassion and accuracy, would be validating. Without that representation, isolation grows. 

Sometimes it feels like MG is so hidden it might as well be invisible. That makes it hard to feel connected to the world. Lack of media representation has a real effect on our mental health, creating a kind of double invisibility – not only is our condition invisible, but it seems as though our stories don’t exist either in the broader social landscape.

Beyond understanding, media representation drives practical outcomes. 

Chronic illnesses often get research funding in proportion to their public visibility. With greater media exposure, MG could attract the attention it needs for more research, better treatments, and maybe one day, a cure. The media has the power to drive social and medical change. 

But as long as MG remains out of the spotlight, we’re left scrambling for awareness and resources.

The good news is that it’s not an impossible problem to address. There are simple yet powerful ways for the media to improve representation. Integrating MG into TV shows, movies, and books could create a relatable, humanized portrayal, bridging the gap between public understanding and the real lives of those of us living with MG. 

When characters with MG appear on screen, even fictional ones, it makes our experience relatable, helping others to see the invisible aspects of our condition and the resilience it requires. 

In fact, there are already small steps in the right direction. For instance, I remember reading recently that the superhero character Madame Web has MG as part of her backstory. While her recent movie portrayal didn’t include it, the very presence of her character in mainstream media suggests that awareness of MG is beginning to grow. 

With more authentic portrayals and consultation with the MG community, these characters could offer powerful and respectful representations, giving a real face to the challenges and strengths of living with MG.

Representation isn’t just about awareness. It’s about seeing ourselves, connecting with others, and feeling like we’re part of the world. To see an accurate portrayal of MG in the media wouldn’t just educate others. It’d give us a sense of solidarity and acknowledgment, something we often go without. 

While we wait for the media to catch up, we continue to share our stories, raise awareness, and hope for a future where MG is represented for what it truly is. And maybe someday, people won’t have to avoid bus stops or look away. They’ll look closer, and they’ll understand.

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