Daniel G. Garza was already thinking about making a video on the drive home from his anal cancer diagnosis.
He had spent years speaking publicly about living with HIV. Sharing what was happening to him was familiar territory. So when he received another diagnosis, he went straight to what he knew: telling people about it.
He recorded 30 days of videos in English and Spanish. Some captured good days. Others showed tears, fear, and what he described as “ugly crying.” People reached out to say those videos helped them understand their own diagnosis or what someone they loved was experiencing.
But helping other people came with something Daniel didn’t fully recognize at the time. He hadn’t given himself space to process what had happened.
“The balance of that is that I had no privacy,” he told me. Years later, he sought therapy to work through what he hadn’t made room for then.
That’s an important part of this conversation. A story can help someone else while the person telling it is still trying to understand it themselves.
Advocacy doesn’t always start with a plan
Daniel is a long-term survivor of HIV and anal cancer, and the director of outreach for Cheeky Charities. His work connects with HIV, cancer, and LGBTQ+ communities, drawing on experiences that began long before anyone introduced him as an advocate.
He talked about being bullied as a child, learning to defend himself, and then wanting to protect other people. After being outed at 17, he became someone other gay people could turn to when they didn’t feel supported.
When he was diagnosed with AIDS in 2000, advocacy started closer to home. He was learning from doctors and nurses while trying to explain HIV to his family.
Then an opportunity to speak on Univision brought his experience to a much larger audience. Invitations to nursing schools and other settings followed. What began with explaining his own life became a way to help others understand lives they might not otherwise encounter.
When I asked Daniel how he defines advocacy, his answer was straightforward:
“Taking my lived experiences and using them to be of service to other people.”
There’s room in that definition for more than a conference presentation or a public campaign. It can mean helping someone prepare a question, sharing something you learned, or listening without trying to fix everything.
It also leaves room for people who don’t want to tell their story publicly. Being of service doesn’t require giving everyone access to your life.
What people don’t see
During our conversation, I talked about how people see an advocate on television or at a conference and think that’s what advocacy looks like. They don’t necessarily see what it took to get there or what comes along with it.
Daniel described people telling him how busy he looked on social media. He was traveling, working, and seemingly doing well. What they didn’t see were the mornings when his bones hurt or the exhaustion after a day of calls, computer work, and preparing another speech.
He was clear that he loves his work. He was also clear that his body has been through a lot. Both can be true.
A person can be good at explaining their experience and still need help carrying it. They can make people laugh and still have difficult days. They can show up prepared without having everything worked out.
For patients and caregivers, Daniel’s experience offers an important distinction: sharing your story and processing your story aren’t necessarily the same thing.
You can decide that something is private. You can change your mind about what you’re comfortable sharing. You can take time before turning an experience into something useful for someone else.
The value of your experience doesn’t depend on how quickly you make it public.
What organizations can take from this
For healthcare organizations, professional associations, pharmaceutical companies, diagnostic companies, and biotechnology companies, there’s a practical question here:
When you invite a patient advocate to participate, are you making room for the person or only the contribution you want from them?
Daniel’s account of pain, preparation, and public visibility gives that question context. So does his wish for more funding and research support, particularly for the Latino and LGBTQ+ communities he works with. He wants to reach more people and exchange ideas with advocates in other places. The desire is there. Resources remain part of the challenge.
An invitation alone doesn’t address those needs.
Applied to patient engagement, this conversation points toward a few concrete practices:
Ask what someone needs to participate rather than assuming their previous experience makes support unnecessary.
Make it clear that an advocate can decline a question or keep part of their story private.
Discuss compensation, expenses, preparation time, and accessibility before the event.
Invite patients to help shape the questions and priorities, not only provide a personal story after the agenda is set.
Explain what will happen with their input and follow up afterward.
These are ways to put partnership into practice.
An advocate’s ability to deliver a compelling presentation shouldn’t become a reason to overlook their limits. And a patient’s story shouldn’t be the only part of their expertise an organization is willing to hear.
Passing something on without prescribing a path
Daniel loves teaching. He described his workshops as a buffet: take the pieces that work for you, then share what helps with someone else.
“I want you to pick up the baton and run with it,” he said. “It’s not meant to stop with us.”
That approach leaves room for different experiences. What helped Daniel may not be what helps the next person. His humor is part of how he connects, but not everyone needs to make a joke out of something painful.
When I asked what he would change with a magic wand, he imagined a space where people could create something from what they’d been through. That might be comedy, a story, a painting, or a sculpture. He wanted people to understand that a diagnosis doesn’t mean they’re broken.
That isn’t an obligation to turn illness into a lesson or a project. It’s an invitation to find an expression that belongs to you.
For someone working through a diagnosis, that might start with a private conversation. For an organization, it might start with asking a patient what matters before deciding what you need from them.
Before asking someone to share their story, ask what would help them feel supported in sharing it. And if you’re the person being asked, you get a say in the answer.
Watch the full conversation with Daniel G. Garza in the video accompanying this post.
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Guest resources and episode links
Earlier Advocacy at Work episode with Cheeky Charities founder David Russo
