A few weeks ago, I reconnected with a school friend. We’d crossed paths at parties before, exchanging the usual pleasantries, but something always felt off—an invisible chasm neither of us could bridge. Then, over a one-on-one dinner on a recent evening, I learned that for the last 25 years he’d been struggling with chronic insomnia. His eyes perhaps told the story of sleepless nights, but I, and I think many others, had missed the signs.
Suddenly, so much about our fleeting, awkward interactions came into focus. The quiet hesitation in his responses, the distracted look as conversations fizzled out. There was a reason we hadn’t connected deeply, and it wasn’t about me—or even him, in the way I had imagined. It was the daily toll of navigating a body that wouldn’t let him rest. His illness, long invisible to me, had shaped his social presence in ways I hadn’t understood until now.
This moment of revelation struck a deep chord with me. Some twenty years ago, I had my own health crisis that resulted in a chronic illness. It crept into every corner of my life, affecting not only how I worked and played, but the very sense of who I was—my ambition, my identity. The parallels between us became visible, and in that shared moment of vulnerability, I felt the gap between us narrow. He hadn’t needed to connect with me, of course, but now I understood why perhaps we hadn’t before now. I felt compassion—for him, for myself, and for how illness hides in plain sight.
“Coming Out” about Illness
There is an unspoken truth that we rarely address in social settings: many of us—more than you might think-- carry invisible burdens. They can take the form of physical illness, mental health struggles, or chronic conditions that wear away at the body’s reserves and the mind’s resilience. And yet, for the most part, these struggles remain unseen and unacknowledged, even by close friends or family.
I remember early in my science podcasting career reading an article about a celebrity genome scientist from Harvard. I had interviewed him a couple times to great enthusiasm from the audience, and we talked of visionary things like a new era of personalized medicine and humans making it to live on other planets. Then out came this article where he revealed that he had narcolepsy, a chronic neurological disorder that impacts the brain's ability to regulate sleep-wake cycles. He would fall asleep at random times during the day. It. could be in the middle of a discussion with his graduate students or at a conference listening to a presentation. Along with the revelation in this article, he used a wonderful software metaphor: he considered it a “feature” rather than a “bug.” He learned to live with it and lived to learn from it.
I must give credit in this story to the journalist as well. She was very good at her job and knew how to listen. This scientist was in his sixties, and his “feature” was unknown to all of us in the field.
In a world that prizes efficiency, youth, and perpetual productivity, admitting to an illness can feel like a breach of the social contract. We are expected to function, to keep pace, to maintain an air of well-being even when our bodies betray us. The result is often a kind of double suffering—not only is there the pain or discomfort of the illness itself, but there is the burden of keeping it quiet, of maintaining appearances, of pretending to be whole when, in fact, we feel broken.
Talking about illness requires a kind of "coming out," a vulnerability that exposes us to others' reactions. In American culture—perhaps less now than in our parents’ generation--there exists a discomfort around sickness. There are the well-meaning but hollow platitudes of "get well soon" or the uneasy silences that follow when someone discloses a chronic or incurable condition. A very good friend of mine was quite careful when she came out about her breast cancer. She said she felt like she had a big “C” inscribed on her forehead. What will be the repercussions among one’s social group, among one’s economic circle? And then the societal impulse to fix, to solve, is frustrated by the enduring presence of the illness. People suffering often choose silence over explanation, keeping their struggles to themselves to avoid the awkwardness that follows.
The cost of this silence is high. It creates a false narrative about what it means to be healthy, successful, or functional. It perpetuates the illusion that struggle is an anomaly, rather than a shared human experience. I learned to manage my illness and have enjoyed a thrilling and meaningful career. The silence just isolates those who are suffering, deepening the chasm between them and the people they care about, between them and their dreams.
There’s a social weight to illness—one that often feels heavier than the physical symptoms themselves. It’s the weight of explaining oneself, of justifying why you can’t keep up, of wondering if people will see you differently once they know. It’s the weight of expectations that don’t align with your reality.
Let’s Shift Our Culture
Social interaction is more and more a mystery to me. So much of what we do with each other is based in deception. And I’m not even talking about the politicians. Yet surely the supreme value we provide each other is the chance for honest expression and connection. When I began to come out about my chronic migraines, I felt a huge burden lifted. I first told a new friend I had just met from Craigslist—a low risk setting. He surprised me by urging me to talk about my ongoing health problem with him. He said that he’d always suffered from poor health, but that often there is a lot we can do. What scared him was money problems. I told him the economic worries didn’t bother me, but I’d never counted on my health giving out. We were a good fit and are still best friends going on twenty years. But what really is the risk? If we are shunned by someone or a group, are they really worth having in our lives? What about work? It can be tricky being in a job where there are always high expectations of productivity. We may have to change our work and make some adjustments, but coming out about illness to those who share our lives will usually lead to bettering our situation.
Let us move our culture forward and acknowledge that illness, in all its forms, is far more common than we realize. In the U.S. alone, an estimated 60% of adults have at least one chronic condition, and 40% have more than one. The chances are, most of the people we encounter daily are managing some form of health challenge, whether visible or invisible. Recognizing this, first we can cultivate a culture of openness and empathy where talking about illness isn’t seen as a lack of social etiquette but as a normal part of life.
Second, we can practice the art of listening—really listening. Too often, when someone reveals their illness, the instinct is to respond immediately with solutions or sympathy. But sometimes what’s most needed is simply a space to speak without judgment or rush. This kind of listening allows the person to feel seen, to share their reality without fear of diminishing themselves in the eyes of others. Illness is bad enough. We don’t need all the fear along with it.
Third, we can be mindful of our language and assumptions. The impulse to offer quick fixes or motivational sayings like "stay strong" can unintentionally minimize the complexity of living with illness. Instead of platitudes, we can offer understanding: "I can only imagine how difficult that must be." Sometimes, acknowledging the difficulty is the most compassionate thing we can do.
At its core, the challenge of coming out about illness is a lesson in vulnerability and empathy. It teaches us that everyone is carrying something, even if we can’t see it. It reminds us to be gentle with each other, to resist the rush to judgment or the expectation of perpetual resilience. After all, illness is not a deviation from the human experience—it is part of it. Our bodies are fragile networks of wonder, subject to forces beyond our control, and there can be profound growth and social solidarity in acknowledging that fact. To speak about illness is to remind ourselves and others that we are not alone in our struggles.
As I sat with my friend that evening, listening to him describe his decades-long battle with insomnia, I realized that we had both been missing out—not just on conversations we could have had, but on a deeper understanding of each other. We were both navigating the world with bodies that refused to cooperate, and neither of us had known it. But in that moment, we didn’t need solutions or sympathy. What we needed was to be seen—to be known in our wholeness, illness and all. We then began to talk about the lessons our poor health had taught us.
My great hero in tough times has been Beethoven. The hardest part for me in coming down with a chronic illness was giving up my ambition and certain ideas of my future, of my identity. I was not a sick person, I told myself. I had so many plans. Beethoven was 28 when he began to notice his hearing loss. Then he was already on top of the music world, and the one sense he relied on was failing, and failing fast. What was he to do? If he told others, they might begin to think differently of him and his music. It could ruin his career. At 32 he became suicidal. Many of us do. Better jump off the bridge and end it than live a life of slowly increasing agony into who knows what end.
Instead, after writing a letter to himself and then to his friends, he composed the Eroica Symphony.
Hallelujah! Amen.