Thorben’s Story

Thorben is an adult in his thirties living in Germany. He works in a business environment in data and finance and is currently working toward a PhD, which he expects to complete in 2026. Outside of work, his life is made up of ordinary, grounding things: reading, running, cooking, music, television, and spending time with friends — activities that allow him to recharge without having to perform socially.

Moebius syndrome has been part of Thorben’s life for as long as he can remember. While the medical diagnosis matters, what shaped him just as much was the social reality that came with it — learning early on that many people rely heavily on facial expression as proof of friendliness, confidence, or agreement.

Thorben’s parents were consistently supportive. Even during the early months and years, when uncertainty was likely at its highest, they made sure he received early therapies, including speech and occupational therapy, to help him develop and thrive. At school and later at university, most classmates were understanding and supportive. There were uncomfortable moments, but over time Thorben learned that many misunderstandings aren’t rooted in cruelty. More often, they happen because people instinctively fill in gaps when familiar nonverbal signals aren’t there.

That same pattern followed him into adulthood. It shows up in workplaces, meetings, interviews, and professional relationships — spaces where quick facial reassurance is often expected. A neutral expression can easily be misread as disinterest, disagreement, or distance, even when none of those things are true.

In 2020, Thorben made the decision to undergo smile surgery through a gracilis muscle transfer. It was a complex process, but for him it added an additional tool — the ability to smile — and something he feels proud of. At the same time, he’s clear that it didn’t remove the need for thoughtful communication or eliminate misunderstanding altogether.

One of Thorben’s biggest challenges has been navigating first impressions. People sometimes hesitate to approach him because they don’t receive immediate facial feedback. In professional settings, he often compensates by being more explicit than most — saying things like “I agree,” “That makes sense,” or “I’m on board with this,” instead of relying on expression alone. He’s learned to confirm intent early so others don’t have to guess.

What Thorben is most proud of isn’t a single dramatic achievement, but steady progress over time. He built a working life that functions well, succeeded academically, and continues to push himself intellectually. One moment that stands out is being asked to give his high school graduation speech — an experience that reflected both his own growth and the acceptance he felt from his classmates. His parents, partner, and friends have always made him feel normal, reminding him that Moebius has never been his defining feature to the people who matter most.

A comment from a friend years ago still stays with him. Before his smile surgery, someone once told him, “You smile with your eyes.” That simple observation helped him focus less on proving something and more on reducing friction in practical ways — without turning himself into an awareness campaign.

Day to day, Thorben’s life looks much like anyone else’s: work, meetings, messages, routines, time with his partner and friends, and quiet moments to recharge. He enjoys traveling, cooking, walking, video games, books, and music — everything from metal and rock to classical and even Schlager. Most of all, he values relationships where there’s no pressure to display a certain expression in order to be seen as warm or approachable.

Some situations remain difficult. High-stakes first impressions, job interviews, group discussions that rely heavily on “reading the room,” and tense conversations where people search for micro-signals can still be challenging. Thorben has learned to decide case by case whether explaining Moebius upfront will help or hinder an interaction. Sometimes a short, practical explanation reduces confusion. Other times, it’s unnecessary. When it helps, he may even use light humor — joking that he has a “built-in poker face.”

One memory from his childhood still stands out. In seventh grade, during a school trip, a classmate made a mean comment that hit him harder than expected. What stayed with him wasn’t the remark itself, but what followed: other classmates spoke up, supported him, and made it clear the comment wasn’t acceptable. The person apologized, and it didn’t become a lasting issue — but that moment of solidarity still gives Thorben goosebumps years later.

If Thorben could share one message with others, it would be this: don’t guess someone’s attitude or character from their facial expression. Ask, and listen to the words. In workplaces, inclusion often isn’t about large campaigns — it’s about small habits: assuming good intent, not equating constant facial positivity with engagement, and making room for more direct communication styles.

And for people with Moebius, Thorben offers reassurance: you don’t owe the world constant explanations. Your character and your actions matter more than what your face appears to show. Embrace Moebius, but don’t let it consume you. The world is usually better than we expect — and when you engage it with openness and curiosity, it often responds in kind.

The Voice of the Moebius Syndrome Community – mfoms.org