Finding Your Lane

The Bathroom Floor Moment That Started It All JJ Singleton was 27 years old when he was diagnosed with colorectal cancer in September 2015. For years, he endured what most cancer patients don’t want to talk about: the relentless physical and mental toll that no amount of disease awareness campaigns seem to capture. There was no makeup. No fresh clothes. No ESPN segment with inspiring music in the background. There was just JJ, laying on the bathroom floor, covered in his own vomit after round after round of chemotherapy, watching professional athletes talk about overcoming adversity. He remembers thinking: nobody ever shows this part. That moment, raw, unglamorous, and utterly honest, became the seed of a mission that would eventually transform how cancer advocacy is done in rural America. Ten years later, JJ has become one of the most authentic voices in the cancer advocacy space, proving that impact doesn’t require polish, and that the most powerful stories are the ones we’re usually too afraid to tell. A Life Saved by a Clinical Trial JJ’s cancer journey followed the path that many stage four patients know too well: chemotherapy, surgery, progression. After the cancer spread through his abdominal wall and lymph nodes, he had exhausted all the approved treatment options. A clinical trial saved his life. But during those years of treatment, JJ lived on total parenteral nutrition (TPN), spending 23 hours a day in bed on infusions. He couldn’t eat. He couldn’t work. He could barely exist in any meaningful way. “That was the rock bottom,” he recalls. Mental health spiraled. The pressure to “shoulder it” as a man in rural Appalachia, to not let depression, anxiety, or darker thoughts show, nearly killed him faster than the cancer itself. Nobody warned him about this. Nobody told him it was normal or that it could be managed. It took working on himself mentally, finding healing through community, and discovering that his story, especially the ugly parts, could mean something to other people. That realization became his exit from the darkness and his entry into advocacy. Three Years of Saying “No” Before Everything Changed When JJ was invited to apply for Fight CRC’s Ambassador program, he didn’t see it as an opportunity. He saw it as a formality. A way to say he tried so he could move on. “I grew up in a small town in Appalachia,” he explains. “I didn’t think anybody wanted to hear what I had to say.” He applied just so he could be done with it. He got accepted. That weekend in Missouri in 2021, when JJ and I first met at the airport, something shifted. He left that training thinking nothing would come of it. But emails kept arriving. Opportunities kept showing up. Someone asked if he wanted to join a Zoom steering committee. He said yes, not knowing what it was. That one “yes” led to trips with major pharmaceutical companies. That one “yes” led to partnerships with medical data companies. That one “yes”—to something as simple as a 15-minute Zoom call—opened doors that showed him a different life was possible. “I would tell myself that advocacy is a whole world put together,” he says of the advice he’d give his younger self. “There’s so many different avenues for it.” Redefining What Advocacy Looks Like When JJ first started his advocacy work, he thought it was all about fundraising. He wasn’t naturally comfortable with that approach, and he was concerned he didn’t fit the mold of what an advocate “should” be. What he discovered is that advocacy isn’t a single lane. It’s a universe. His focus became threefold: awareness, policy, and clinical trial advocacy. But beyond those categories, he realized his unique position, a young cancer survivor in rural Appalachia, gave him access to something most coastal, urban advocates didn’t: insight into how cancer impacts underserved populations. Rural health disparities are real. Cancer centers are built around population centers. When you live in the mountains of West Virginia or Kentucky, you don’t have the same access to cutting-edge treatments, clinical trials, or even mental health support that someone in a major metropolitan area takes for granted. JJ made this his mission. While many advocates focus on policy and fundraising in visible, prestigious circles, JJ focused on something equally important: reaching the untold number of people in rural communities who would never set foot in a comprehensive cancer center. The Courage to Share What Others Hide One of the most striking aspects of JJ’s advocacy is his refusal to curate his story. In a social media landscape obsessed with highlight reels, JJ posts about the bad days. He writes about suicidal thoughts. He talks about depression and isolation. He shares what it’s actually like to live with cancer, not what people want cancer to look like. This wasn’t always well-received. “I had pushback from people in my town,” he remembers. “They didn’t want to hear about the bad, the mental health, the suicidal thoughts.” But he kept going. And as the culture slowly shifted, as people became exhausted by perfectly curated lives, his raw, honest storytelling resonated. What started as 20 likes on a post that terrified him to share now regularly reaches thousands of people. But here’s what’s remarkable: JJ doesn’t do it for the engagement metrics. “If it had 20 interactions or 2000 interactions, if it could help somebody at their darkest moment, then that means something,” he explains. “Once I accepted that, it didn’t matter. I just put out what I felt.” This is the opposite of how most of us are taught to think about social media. It’s the opposite of how brands and influencers operate. And yet, it’s precisely this approach that has made JJ one of the most trusted voices in cancer advocacy. The Economics of Advocacy: What Nobody Talks About One of the most practical and important points JJ raises is something that rarely gets discussed: how do patient advocates actually afford to do advocacy work? The romantic image of advocacy is that it’s a labor of love. And it is. But labor requires sustenance. JJ is on Medicare and Medicaid. If he takes regular income, it can trigger benefits reviews that might disqualify him from the support he relies on. This creates a catch-22: he’s wanted by organizations, but he can’t simply accept payment without jeopardizing his health benefits. “The biggest misconception is either you do it all on your own or you get paid for everything,” JJ says. “Neither is true.” What works for him, and what he advocates for, is creative compensation: * Travel reimbursement doesn’t count as income for disability benefits, so covering flights, hotels, food, and transportation means he can afford to participate. * Smaller companies often offer gift cards or other non-cash compensation for consulting on projects. * Larger organizations can donate to the advocacy organizations he represents, which then provide him travel support. * Contractors are willing to work with you if you explain your situation. They want your expertise as a patient; most will find a way to compensate you ethically. “They’re wanting to help because they want the information that you have as a patient and as an advocate. Most of the time they’re willing to help in whatever way possible,” JJ explains. For anyone considering advocacy work while on disability benefits, this insight is critical. You don’t have to choose between financial stability and meaningful work. You just need to be transparent about your constraints and creative about solutions. Why Companies Actually Care What You Think JJ sits on multiple steering committees with major pharmaceutical companies. He watches how organizations use (or ignore) patient feedback. And he’s noticed a clear trend: the ones who listen get better outcomes. “If they’ve actually listened to the patient and used their ideas and suggestions throughout the process, you can tell,” he says. “And if they haven’t, you can tell immediately. And that’s an automatic turnoff.” But why do companies suddenly care abo… This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit www.advocacyatwork.com