I started creating content after I was diagnosed with cancer. It helped me through the hard times — until my hair grew back.

"Hi. My name is Sarah. And I'm Sophie! We're sisters, and we both have breast cancer. Welcome to our influencer journey! Like, comment, and subscribe."

It was 2023. I was 35, terrified, and trying to make sense of my diagnosis alongside my sister's. We'd both been told we had breast cancer three months before posting our first-ever TikTok, and the video was meant to be a bit tongue-in-cheek. We never really considered becoming "cancer influencers," being the camera-shy millennials we were.

I also quickly discovered the cancer influencer space was already quite saturated with camera-ready patients, strategically documenting their journeys. With a growing number of younger cancer patients, this wasn't particularly surprising, as many turn to social media to process and feel connected to a broader community, no matter the issue.

Still, the concept of being a "cancer influencer" seemed inherently at odds with what I knew about being a patient, which I believed to be a vulnerable, largely private experience.

Why become a cancer influencer?

When I first received my own diagnosis in March 2023, I could barely even grasp the word "cancer" as it applied to me, much less imagine identifying with a hashtag.

Instead, I spiraled into a hole of panic. I cried in disbelief that this was happening to me, and wondered what I had done to deserve cancer.

What followed were weeks of decision paralysis over which surgery to choose, whether to pursue fertility preservation, weighing chemotherapy, and trying to make sense of which medications to be on.

I was left to piece together advice from breast surgeons, plastic surgeons, radiologists, genetic counselors, oncologists, and social workers to create my own plan. And navigating a fragmented medical system was profoundly isolating, so I began looking online for advice.

That's when I discovered the digital universe of cancer influencers. Under my bedroom covers, the screen of my phone reflecting my newly bald head, I scrolled through influencer after influencer, wondering how they were able to undergo treatment while considering branding, hashtags, and captions. I could not look away.

Take Justine Morris, for example, a 32-year-old breast cancer survivor with over 73,000 followers on Instagram. I came across her posts on my feed, which included everything from chemo infusions to hair loss to the home renovation process, and DM'd her to ask why she chose to share her story online. She told me that being a cancer influencer gave her a sense of purpose.

"If sharing my journey helps even one person check themselves, feel less alone, or advocate for their health, then everything I went through means something," she replied.

In my search for others, I also found Trish Michelle, who was diagnosed with breast cancer at 35 and chose to document her journey for her 7,000 Instagram followers. She wanted to see Black women her age talking about chemo, recovery, and surgery.

"That representation just wasn't there. So I thought, 'Well, if I can't find her, I'll become her,' " she said.

Going public with my diagnosis

I had no real intention of sharing my own experience online. I felt repelled by the cancer identity, and wasn't public about it beyond my close friends and family.

That quickly changed once I was outed by a well-meaning GoFundMe bluntly titled "Sarah has Cancer," which a friend set up on my behalf. Shortly after, another friend signed me up for Patreon, promising it was a more private social media platform where I could conveniently update my friends, family, and colleagues on my progress all at once and serve as a second way to raise much-needed funds for my medical expenses. The startup I'd been working at had unexpectedly shut down, leaving me without a job the week I was diagnosed, so I begrudgingly agreed to try it.

On Patreon, where I posted videos, photos, and essays about my treatment and recovery, my content was only visible to subscribers. The donation amount was flexible, and while anyone could technically subscribe, I only expected direct contacts to follow me.

My first post, shared in July 2023, six days after starting chemotherapy, was a 27-second video titled "Foray into influencing…," where I poked fun at the absurdity of me, a self-proclaimed introvert, trying to be a #influencer, picking the best lighting for chemo selfies. Though unserious, in the video, I noted the very real physical changes my body was undergoing. My hair was still there, but pimples had started to decorate my face and body, an unexpected symptom of my chemo.

Off camera, I thought I had no business being in the content creation space. With stage 1 cancer, who was I to be the "face" of anything, let alone breast cancer? There were people who had it worse than me, who were more compelling, inspiring, sadder, funnier, braver, sicker.

So when my little video on Patreon garnered some likes and subscribers, I was surprised, and the validation felt nice. I began posting daily. I wrote about a photo shoot I did before surgery to commemorate my breasts and the process of losing my hair. I wrote about what chemo felt like in my body, how being in a medically-induced menopause affected my sex life and was transforming me, why cutting out alcohol after cancer felt completely unfair while I was young in New York City, the trauma of being rushed into fertility preservation as a side quest to cancer, experiencing a failed egg retrieval, and my thoughts on infertility after chemo. I wrote about how treatment took all of my estrogen and collagen. The likes and subscribers flooded in.

I liked it and wanted more.

Despite years of trying to get my writing noticed — I had an MFA in creative nonfiction writing from The New School — and a decadelong editorial career, I never had much success launching my creative nonfiction career. But now, for the first time, my writing was being noticed because it was on a topic people seemed to inherently care about. So long as it was about cancer, what I had to say mattered. I had been legitimized by disease.

In fact, the more I broadcast my most vulnerable moments, like a photo of a clump of hair next to a brush, the more people tuned in with prayer hand emojis flooding the comments. Viewers appeared to be amazed by the strength of a person who turned tragedy into art, and I was quick to deliver.

The sicker I looked, the more people subscribed

I was not alone in realizing that suffering could attract an audience.

"My following started to grow when I began sharing about treatment," Morris said to me. "I noticed that video views nearly doubled when I was crying or visibly struggling. I gained about 11,500 followers during the first two months of my diagnosis."

Emily Ong, another breast cancer survivor, has over 36,000 Instagram followers. Though her following wasn't built on cancer content, after posting about treatment in November 2016 on her blog, she said she "definitely saw a lot more engagement and online support."

For the year I was in active treatment, which included surgery, chemo, and radiation, I leaned into the cancer identity on the internet. It felt good having an audience to affirm my pain — and my writing. Each new follow gave me a dopamine hit, and I didn't want that particular part of my cancer experience to end.

At the height of my illness, my income from Patreon subscriptions brought in nearly $1,000 a month, which was surprising yet helped sustain my life. Aside from my GoFundMe, which raised about $56,000 for two rounds of egg retrievals ahead of chemo, Patreon was my only source of income during a time I feared creeping medical debt could swallow me whole.

But when I noticed my metrics were contingent on where I was in my treatment journey, I worried about what would happen to my engagement once my body started to look normal again. Would my viewers taper off as well? Would my story matter anymore? Would I matter?

What would happen to my followers once I recovered?

"As the visual manifestations of my cancer start to disappear — my hair will grow back and my breast will heal from radiation and surgery — I will need to be more vocal about what it means to have breast cancer at 35 because my struggle (and so many others my age) starts to become invisible," I wrote in a 2023 Patreon post, three days after ringing the bell to mark the end of my active treatment.

A few months later, my hair did begin to grow back, and I lost about half my subscribers and subsequent income. Morris said she, too, lost engagement once she started to look better, saying it felt "really hard." She added, "You want people to stay supportive and invested in your healing, but often the attention fades when the illness is no longer visible."

Sarah Shuster, a somatic therapist and former caregiver, explains that people often "rally around what they can see and respond to immediately, like a surgery date, a treatment milestone, or a fundraising goal."

"But as an illness becomes less visible, more open-ended, and increasingly tied to emotional elements such as identity-grief," she continued, "support systems and broader audiences often struggle to stay present."

The whiplash of becoming "invisible" once active treatment ended left me shouting into the void that, actually, my adjunctive treatment would continue for another 10 years, putting me in a medically-induced menopause with joint pain, hot flashes, brain fog, weight gain, sleep issues, and loss of libido so profound that I felt I had been chemically castrated. But I started to feel self-conscious about continuing to write about cancer when I no longer looked the part.

Michelle noticed the change too once she started to appear well, telling me, "Now, years later with my full head of hair and no visible signs of what I've been through, I sometimes catch myself wondering if I still have a legitimate voice here."

The other side of chemo can be one of the loneliest times, with many patients most vulnerable to depression just as their support systems begin to fade.

"It's easy for the people around you to assume that it's over. Meanwhile, you've been permanently changed, and you're just deposited back into what remains of your previous life, knowing you can't actually go back," said Charlotte Christopher, a therapist specializing in oncology and a breast cancer survivor herself.

"Having a public identity tied to being sick and losing engagement could compound that experience of a loss of support and make it harder or more complex to navigate the transition, she added."

Social media pressure led me to relive the past

It felt odd to be nostalgic for a time I should want to forget, but I missed chemo because I had structure, abundant support, and sympathy, both in-person and online. I found myself recycling old photos from when I was bald, and clinging to that phase of my life through Patreon posts as I desperately tried to stay relevant to my subscribers. My views continued to dwindle, from the hundreds to the tens to the single digits.

I wasn't alone in feeling the unspoken pressure to remain visibly sick on social media to sustain viewership, community, sympathy, or even income.

"Sometimes I repost old videos or create compilations from treatment to stay relevant, but it's something I wrestle with," Morris said. "I've realized my story will always include cancer; it's part of who I am."

I found it difficult, if not impossible, to pivot from cancer content after building a platform predicated on my illness. But with each #throwback bald pic, I worried I was lingering on the topic longer than I should. Was I milking the breast cancer thing — an identity I once rejected wholesale — to keep subscribers and legitimacy as a writer? I live in that tension between genuinely wanting to write about cancer and recognizing that doing so can sometimes feel like commodifying my disease. I also think if anyone should have a right to commodify cancer, it should be us, the patients-turned-content creators.

"The challenge isn't just surviving cancer," Michelle said. "It's figuring out who you are when you're no longer 'the sick person,' but cancer is still part of your story. That journey deserves space online, even if it doesn't always get the likes."

Michelle, who's now the chief community officer of The Breasties, a nonprofit organization creating community for those affected by breast and gynecologic cancers, said: "There's a whole generation of young survivors like me navigating life after treatment, and we need those stories too."

Sharing my experience of medically-induced menopause feels particularly meaningful as that part of the treatment is rarely talked about. Through my content, I hope to broaden understanding and ultimately help improve how young breast cancer patients are treated and supported.

But in addition to my #authentic intentions, I'm well-aware that latching onto the "cancer brand" is sometimes nice. Automatic legitimacy. I never thought I would be so public about the experience, let alone have a Patreon dedicated to it. After all, being a content creator on social media is not me, but then again, I also thought cancer was very not me.

Now I'm a cancer person claiming the identity tighter than ever, yes, to stay relevant, but also — and importantly — to remind people that cancer doesn't end when the hair grows back.

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