On Aug. 5, social media influencer Sydney Towle died after a three-year battle with cholangiocarcinoma, a rare cancer of the bile ducts. Towle was 26 years old and had traveled, exercised, kept her hair, and modeled in Miami Swim Week as she fought cancer; she documented the highs and lows of her experience online. Her death has sparked conversations on social media about what cancer looks like and what it means to live with an illness that isn't always visible.
On Aug. 12, Katie Couric Media shared an Instagram post highlighting cancer activist Matthew Zachary's article about the significance of Towle's journey and the complicated implications behind what people often expect to see in someone who's sick. Comments poured in from cancer patients, their friends and family, medical professionals, and people with different types of invisible illnesses. The takeaway? "You can look well and still be living with something incredibly hard," as one comment reads.
We appreciated the conversation — and so did Towle's brother, Austin, who wrote, "Very well said, Katie and team. Thank you so much for supporting Syd." We collected a few of the many meaningful responses to that post below in hopes of continuing this very important dialogue.
"I receive daily DMs or even direct comments saying I’m 'lying' for having stage 4 cancer. People go as far as asking others if they have ever actually seen me in a hospital setting and why I don’t share that 'content.' One of the hardest parts of living life out loud is the accusations." - @myjourneytojustlive
"Believe me when I tell you that of all the chemo side effects I had, losing my hair was the worst, because it made me look sick. If there was treatment available that could have allowed me to walk through the world looking like myself in dignity, I’d have grabbed it." - @gilapfeffer
"Lung cancer oncologist tagging in here. I couldn’t agree more. The goal of cancer treatment isn’t to make someone look like a 'cancer patient.' It’s to help them live, and actually feel, as well as possible for as long as possible. You can look well and still be living with something incredibly hard. Be kind, y’all." - @lungoncdoc
"Thank you, Katie, for making this post! I can completely relate, as I am currently experiencing something similar. Showing people that this journey can look different has almost been a bigger challenge." - @alogibson
"I’m 37 years old with stage IV cancer (the same as Syd's), and I frequently hear, 'You look great, I’d never know you have cancer.' Honestly, it made me acutely aware that there are so many people with invisible illness and disease. I’m a much more compassionate human, and I hope to change perspectives and the face of terminal illness, like Syd did." - @queenplante
"I’ve been living with scleroderma for 22 years, and now it’s affected my lungs. I refuse to let it run my life. I still have dyed hair, I love fashion, I do Pilates, and I show up for our large, beautiful family. I have so much to live for and will continue to fight until it’s my time." - @maryngarcia
"My dad had the best round of golf of his life one day before his diagnosis — and three weeks before his death from cholangiocarcinoma [a rare bile duct cancer]. I’m so happy for Sydney that, like [my dad], she was able to live her life well for so long." - @nkpontarelli
"My daughter had stage IV melanoma and looked healthy and beautiful and continued to be kind to all until she passed away at 26, just two and a half years ago. No one knows the battle unless they’ve fought it or watched it take a precious life." - @merbthehairwhisperer
"I have the same disease Sydney had, and like her, I don’t look sick. I’ve been stage IV for five years. During chemotherapy, I’ve traveled to more than a dozen countries, never lost my hair, and have maintained a normal weight. That invisibility can be incredibly frustrating. I can be completely exhausted from chemo and its side effects, but on a bus or subway no one would ever think to offer me a seat because I look perfectly healthy. I always told Sydney to try to ignore the haters because what they said reflected far more on them than it did on her. Of course, that’s much easier said than done, especially when you’re already dealing with so much. Cancer doesn’t always look like cancer, and neither does the toll it takes." - @ska_kongshan
