When social media influencer Sydney Towle died last week at 26 — after three years with cholangiocarcinoma, a rare cancer of the bile ducts — more than a million people were following her life online. They watched her endure treatment, travel when she could, cry when things became unbearable, and dance when they weren’t. Most saw a young woman trying to remain a young woman while living with a devastating disease.
Meanwhile, others saw evidence of fraud when there was none.
Apparently to them, Sydney looked too healthy: She traveled, exercised, and, worst of all, still had her hair. Anonymous critics (read: trolls) scrutinized her photographs and medical history, and even reached out to her former employers and healthcare providers to "confirm" her illness. These…specimens of humanity became convinced that a woman living with Stage IV cancer could not possibly look as good as Sydney did.
I’ve been thinking about why.
Thirty years ago, when I was diagnosed with brain cancer at 21, people told me, “But you don’t look sick.” I was strangely delighted by that; nobody wants to look sick. Even when 33 treatments of craniospinal radiation left me bald, this college senior could have passed for some artsy kid with a Trekkie complex who shaved his head to look like Captain Jean-Luc Picard.
Decades later, I produced an eight-part audio documentary called The Cancer Mavericks, about the history of cancer advocacy in America. One episode explored cancer in film and TV, and I began to understand how those portrayals shaped our expectations of what cancer patients are supposed to look like. Some Americans encountered cancer on a screen before they encountered it in their own lives.
Hollywood "taught" us what cancer looked like. In Dark Victory, Bette Davis remained glamorous while a brain tumor killed her. Love Story gave us Ali MacGraw, pale and beautiful, dying young. In Terms of Endearment, Debra Winger maintains a remarkably vibrant physical appearance even as her terminal cancer progresses. My mother, a film historian I interviewed for the documentary, described Hollywood’s preference for “clean cancers”: illnesses that could kill beautiful actors without making them look too unpleasant while doing it.
Those portrayals evolved over the decades: Eventually we saw characters undergo chemotherapy, vomit, lose their hair, and survive. Cancer on screen became less sanitized and more authentic. But those images also taught us that serious illness had an appearance.
Then medicine changed faster than our expectations of what illness should look like.
Cancer treatment today isn’t solely focused on the cure. Millions now live with cancer indefinitely, with no bell to ring and no finish line to cross. From a medical standpoint, that often means extending a patient's life while reducing suffering. Since 1996, I’ve been part of a generation that helped build an ecosystem of supportive care around patients living with cancer. Better medications control nausea and pain. Rehabilitation preserves function. Reconstructive surgery and prosthetics restore what treatment takes away. Fertility preservation, mental health care, and survivorship programs acknowledge that keeping someone alive and helping someone live are not the same thing.
Even hair loss, perhaps cancer’s most recognizable visual shorthand, has become an increasingly unreliable marker. Chemotherapy never universally meant baldness, and many treatments don’t cause complete hair loss. Now scalp cooling can significantly reduce chemotherapy-induced hair loss even for many patients receiving drugs known to cause it. More people can undergo cancer treatment without looking the way generations of us were taught cancer patients should look.
I saw that collision more than a decade ago.
In 2014, as CEO of Stupid Cancer, I served as a consultant and script advisor for Chasing Life, a television drama about a young woman diagnosed with cancer. Yet some viewers became fixated on the main character not losing her hair “fast enough” when chemotherapy started. When she eventually did, there was almost a sense of satisfaction among some viewers. Finally, now she looked like someone with cancer.
Hair had somehow become a credential, the bouncer-approved ID to enter the club.
Sydney encountered the same expectation years later, except she wasn’t playing a character. She was actually sick. The cruelty became so extreme that her oncologist publicly confirmed her diagnosis and The New York Times reviewed her medical records. Still, suspicion persisted.
Sydney responded with considerably more grace than most of us could muster: “I’m sorry that they are so angry that living with cancer can look different than they think it should.”
That statement reaches far beyond cancer. Millions live with autoimmune diseases, chronic pain, Long COVID, depression, and other conditions strangers cannot immediately see. We routinely ask them, explicitly or implicitly, to provide visual evidence of suffering before granting them the legitimacy of being sick.
That distinction will only become more important as medicine gets better at preserving function, appearance, independence, and identity through serious disease. More sick people will work, travel, keep their hair, and look remarkably like everyone else.
That’s progress.
Sydney Towle shouldn’t have needed to look more like she was dying for strangers to believe she was sick. Our expectations of illness simply haven’t kept pace with medicine.
And one final caveat? Sometimes a troll is just a troll.
Matthew Zachary survived brain cancer at 21 and spent the next thirty years refusing to let American healthcare off the hook. He is the author of We the Patients: Understanding, Navigating, and Surviving America's Healthcare Nightmare (Wiley), the founder of Stupid Cancer, and the CEO and co-founder of We the Patients, a national movement organizing patients into collective civic power.
