Ten years ago this November I lost a dear friend. Brandon Lacy Campos was a Black queer activist and writer who was living with HIV, living with mental illness, and who also struggled with addiction. Brandon and I met in 2006 when I was in Minneapolis for a speaking gig at a university—and before I knew I could demand hotel accommodations that should have been part of my contract—I needed a place to crash—and mutual friends put us in touch. He let me stay in his studio apartment and we were instant friends.
Brandon was very candid about his life, his writing and his activism, that he suffered from post-traumatic stress disorder (PTSD) due to being a survivor of childhood abuse (bit.ly/blog-ptsd-tragedy). Brandon, like many people living with HIV, dealt with mental health illness that most likely contributed to his seroconversion.
Despite the large amount of research demonstrating that a history of mental illness, adverse childhood events (ACEs) and trauma are all strongly associated with HIV acquisition, most of the HIV policy and advocacy work over the last decade has focused on biomedical issues relating to access to antiretroviral therapy and viral suppression. So in documents like the National HIV/AIDS Strategy, or the various state and county “end the HIV epidemic” plans, you’re most likely to see plans and an HIV care continuum that reflects concerns with the following questions:
- How many people tested for HIV?
- How many are diagnosed?
- How many started antiretroviral therapy (ART)?
- How many reached viral suppression?
In some respects, there is good reason for public health programs to be focused on these issues. The HIV care continuum is a useful measure to hold our health care systems accountable to ensure people living with HIV are accessing care and achieving success in terms of their viral suppression, which decreases the likelihood of HIV-related illness and increases the lifespan of PLWH.
But as has been pointed out by the People Living with HIV Caucus and its member organizations, achieving viral suppression is important, but it is not the only measure we should be concerned with. These groups and other activists were successful in getting a “quality of life” metric named in the 2022 National HIV/AIDS Strategy update.
Why is quality of life important? We know that even with all the success of ART helping people living with HIV lead “normal” lives akin to managing a chronic condition, there are still many issues that impact the quality of life for PLWH that supersede viral suppression. And those issues can impact their mental health and emotional well-being.
Many of my friends, lovers and colleagues who are living with HIV have embraced their diagnosis but they still have to contend with a hostile and ignorant world.
Mental illness or other psychological stressors can be both associated with being diagnosed with HIV and often result from an HIV diagnosis. A 2014 study published in the American Journal of Public Health found that HIV prevalence for people in the U.S. receiving mental health services was four times higher than in the general population (bit.ly/HIV-mental-health-prevalence-study). It also found an “association between psychiatric symptom severity and HIV infection, indicating that engaging persons with mental illness in appropriate mental health treatment may be important to HIV prevention.”
As much research has shown us, ACEs including exposure to violence, abuse and trauma, neglect, homophobia and transphobia can impact one’s self-esteem and ability to negotiate the terms of sex with partners later in life, which can make one more likely to then acquire HIV. A 2016 study found a strong association between ACEs and increased risk behaviors associated with HIV acquisition (bit.ly/pmr-ace-hiv-risk-study).
But it’s not just having a background of abuse or violence that creates mental health challenges for PLWH. Being diagnosed with HIV itself may cause or exacerbate mental health challenges. The stigma of having HIV is still prevalent in the U.S. and in most parts of the world, and the disrespect for people living with HIV shows up in news stories, pop culture, criminal justice systems, and too often in medical settings—which is the one place you’d expect people to be treated better than anywhere. Feeling isolated, unable to have a healthy sex life or romantic partners, the pressure to disclose one’s status or the fear of actual criminal penalties including prison for having sex can be reasons that lead to other mental health challenges.
Many of my friends, lovers and colleagues who are living with HIV have embraced their diagnosis but they still have to contend with a hostile and ignorant world. My friend Brandon also wrote in a blog post for TheBody.com two years before his death that his use and addiction to methamphetamine came as a result of his HIV diagnosis (bit.ly/queer-poz-and-colored). So, while having HIV from a medical standpoint is no longer a death sentence, many things in our society still make having HIV an extremely difficult proposition for a lot of people.
Since most people living with HIV already know the personal challenges and stigma the virus carries with it, this issue of POSITIVELY AWARE is mostly focused on the things people can do, and are doing, to take care of their mental and emotional well-being. I sincerely hope that these feature articles, personal stories and tips help you know that you’re not alone, and there are some strategies and resources to help support your overall mental health and emotional well-being.
In the name of my friend Brandon Lacy Campos, your HIV life matters.
In Struggle,
Kenyon