For those living with HIV, self-care and wellness should coexist with long-term medical plans; the former is what this “third wave” of advocacy is crashing in on.
Every December 1st, the world comes together to recognize World AIDS Day, the last global pandemic before COVID-19 that caused an unprecedented loss of life while also raising awareness to stop the spread of HIV. But as another World AIDS Day comes and goes, it’s important to recognize how different the disease has become, which is why the conversation among HIV advocates and medical professionals is finally pivoting into the “third wave” of HIV advocacy: HIV wellness.
The first wave of the epidemic was slowing down the death rate of patients and establishing a long-term medical plan. The second wave after years in crisis mode was slowing the transmission of HIV to new patients, making it possible for people living with HIV with undetectable viral loads to greatly lower the risk of transmitting the virus to others. As the 35th anniversary of World AIDS Day approaches in 2023, the third wave should enhance the quality of life of patients and amplify their medical treatment with a wellness regimen.
That’s the opinion of HIV advocate and San Francisco yoga legend Darren Main and nurse practitioner and health coach, Jill Baker. I met with the two thought leaders to learn more about their upcoming HIV Wellness program, launching next February. The story of how their paths crossed is truly one for the ages. Twenty-two years ago, Darren was newly diagnosed with HIV and unsure of the right medical path to take. “I was very suspicious at the beginning of working with a doctor,” Darren reflected, “because I had been around the gay community in the first few years of the virus and saw how earlier drugs prescribed like AZT killed a lot of people.” That’s when he met Jill.
Jill was only the second nurse practitioner he met after his diagnosis, but their mutual interest in yoga and exploring a wellness regimen to accompany a prescription plan led to a decades-long bond. “I’ve been a family nurse practitioner at Kaiser for 22 years and worked on Internal Medicine for patients living with HIV,” she shared, “and Darren was one of my first patients there. As I began to look at shifting my work, Darren really helped me think about the parts of patient support outside of that medical setting, so now I’m a health coach in this HIV wellness space where we really haven’t seen anything like this before.”
They certainly are onto something. I tried to research “HIV Wellness” online and saw very few results. As someone who works closely with communities that live with various chronic conditions, I learned there wasn’t nearly enough coverage from leading health publishers on the importance of self-care in addition to the clinical responsibilities of patients and health care providers. Of all the communities who voiced their concerns over outdated terms or a lack of holistic support in health content online, the HIV patient community had the most feedback to offer. In my time connecting with HIV bloggers and advocates, I learned about the struggle for people living with HIV to see themselves in content that was meant specifically for them by health journalists or doctors. And while I personally don’t live with HIV, I do live with other autoimmune illnesses and can empathize with figuring out how to live life as best as you can with the cards you’re dealt.
Darren and Jill’s new HIV Wellness program, which people can sign up for ahead of its debut, plans to fill that information gap with their six-week coaching program for people newly diagnosed with HIV as well as for folks living with HIV for 30+ years. “We’re attempting to offer many things,” Darren said. “It’s for people who are HIV Positive and want to go beyond good numbers.”
“Medicine nowadays allows us to keep our viral levels low and get you undetectable, but is that the only goal?” Jill asked. “I looked at someone like Darren, who takes care of themselves and practices true self care, and realized that the medicines do a lot, but they can’t get you that. And that’s what’s amiss in medicine—we don’t really think about how to make somebody feel good in their body. Healthy in their body. We just prescribe the medicine.”
With every new patient Jill worked with, she worried about several other lingering issues they might encounter. “You worry about all of these other conditions they’re more likely to have like blood clots, cholesterol or heart disease, all of these things that are inflammatory, so why aren’t we pushing an anti-inflammatory diet? We don’t even know what happens to your gut flora when you have HIV. Why aren’t we talking about things in medicine? It’s like we skipped over all these things that are more likely to happen to someone living with a chronic condition.”
“It’s a good first step to have fewer people testing positive through PREP, and it’s also good for people who are positive to not continue getting sick and to have an undetectable viral load. That’s all great, but again that’s not wellness. There’s a lot of gay men that are healthy in terms of their not getting sick and dying, but is that just gay men averting a crisis?” Darren asked. “There’s a lot of trauma to unpack, still.”
“When I turned 50 it really hit me,” he revealed. “Many of my straight counterparts enter mid-life and question their purpose in life. I’m just always surprised I’m even alive. Anybody I knew that was 10 years older than me was dropping dead, so I didn’t even think I’d see 40. I’ve processed the trauma of the initial diagnosis, but what is the rest of my life going to look like? It’s uncharted terrain.”
Their six-week online program allows Jill and Darren to share their expertise in this space in group support settings as well as individual coaching videos with different topics each week, covering important subjects like sleep, diet, exercise, and mindfulness to make the daily lives of their attendees more fulfilling with the addition of learning from their own community in the group setting. Of course, everyone is required to be treated by a medical team in order to join the program. They require that you start with a doctor, get your medical regimen under control, and then you can begin to build community and a stronger daily life with their program.
It’s also important to note that their program isn’t just for those who can afford their rates as the community of people who live with HIV ranges in socioeconomic status. Participants who do have their medical support under control but lack the financial means to join their program have the opportunity to sign up for scholarship-funded access to their program. Further down the line, Darren and Jill hope to incorporate their program into the offices of nonprofit service providers, using their coaching to help folks from all walks of life.
So what do Darren and Jill think is in the next chapter of the HIV virus? Darren hopes to reframe our collective perception from what it once was, similar to the COVID crisis or other long-term chronic illnesses. “I think that moving beyond HIV as this crisis illness into something similar to living with diabetes is the right option for the newly diagnosed. HIV is a more manageable chronic condition for most people. Yes, you can take your insulin, but if you’re not managing your diet, your insulin and meds are somewhat limited. HIV Wellness goes with taking the medicine, slowing the spread, opening up and sharing with people so we get this sense of collective support from their newfound communities and practicing wellness to the best of their abilities every day.”
Michael Kasian-Morin is a writer and editor in San Francisco who frequently contributes on behalf of chronic illness communities and LGBTQIA+ issues.
San Francisco resident since 2008. Passionate about accuracy in journalism, personal health, climate change, & LGBTQ issues. Creative, empathetic, collaborative. Casually obsessed with giraffes, tinsel, rollerblading, cultivating a black & white wardrobe, carefully curating mixtapes and creating collages out of old magazines.