How people living with HIV maintain optimum mental health wellness in these tumultuous times

It is impossible to not notice the turbulence in our world these days. Politics, public health threats, injustice, gender- and racial-based violence, climate change, and other issues of global concern are on a 24-7 cycle in our news and social media outlets. The stress of our everyday lives is making it hard to even breathe, figuratively and literally. 

There have been scores and scores of studies done that show stress as a direct adversary of wellness. Stress is a killer. If you’re living with a chronic health condition, stress can exacerbate the symptoms. 

When it comes to living with HIV, the effects of stress are deeper. The stress of living with HIV can put people at a higher risk for mental health issues such as depression or mood disorders. And it won’t go away by just getting to undetectable. For some, it means dealing with suppressed trauma and healing from past adverse events so that their physical health can be maintained. 

Self-care, the act of taking care of one’s own needs first in order to be more productive, is a term that has been used for decades by therapists, mental health advocates, and counselors. It was popularized in the early months of COVID as people were looking for ways to grapple with the world being shut down. Self-care has several biophysical benefits in addition to boosting our immune system and lowering the risk for heart disease and high blood pressure. 

Mindfulness-Based Stress Reduction is another strategy being embraced more by people from all walks of life. It’s more than closing one’s eyes and counting to 10 or simply visualizing a happy place. MBSR is a practice that embraces yoga and meditation techniques to provide relief from stress and anxiety. It’s  being used more and more every day in popular society. 

Three people who work in public health while living with HIV discussed their concerns regarding mental health wellness, and how they cope. 

George Kerr is a public health advocate, and the founder and CEO of G III Associates, a nonprofit consultation and advocacy organization in Washington, D.C.

Masonia Traylor is an Atlanta-based HIV/AIDS activist and founder of Lady BurgAndy, a nonprofit organization that aims to create spaces and opportunities for women and youth impacted by HIV/AIDS. 

Kellie (last name withheld) is a care coordinator for government programs in the state of Illinois. 

What concerns you the most when it comes to mental health for people living with HIV?

GEORGE KERR: There are not enough resources to get people into therapy who need it. And for those who do seek it, there’s a long waiting period. I had a client call me earlier this year. He is HIV-positive. He was doing great, with work and everything. When COVID hit, he lost his job. He fell into a huge depression and was suicidal. When he reached out for help, they told him that there was a two-month wait to get into therapy. If you have someone who is suicidal, two months is not acceptable. We need someone, like yesterday.

KELLIE: I think a lot of people are not aware of the resources that are available. I’ve been HIV-positive for nearly 30 years, so this is nothing new to me. A lot of people are afraid when they are first diagnosed. They don’t know where to turn. There are many community-based organizations who can coordinate care. Also, medications are extremely expensive. For people on Medicaid, that’s generally not a problem. But for people with HIV who take medications daily and rely on commercial insurance, we have huge co-pays and deductibles that we have to meet before that coverage kicks in. So that can be scary as well. Editor’s note: A case manager can help people with private insurance access financial assistance for medication, such as that available through Ryan White programs or pharmaceutical companies.

MASONIA TRAYLOR: Stigma. Historically, HIV has been weaponized. And because it’s weaponized and highly stigmatized it’s never seen as a positive thing. It’s very morbid. And because we all have perpetuated that stigma in some form or fashion, most people struggle with an HIV diagnosis. People have to be convinced that it’s okay. They have to be assured that they’re fine.

What are some of your coping strategies?

KERR: I have therapy every two weeks. And that’s what saved me, my therapist being there for me throughout all of this. Having those 15-minute conversations every other week has really been a lifesaver for me. I do a lot of walking. I enjoy walking by the water. That’s been very instrumental. My pastor has been my spiritual guide. I have a Bible study that’s been instrumental. We have small group discussions and we talk about our concerns.

KELLIE: I have monthly therapy sessions to discuss my fears or stressors. And I learn techniques to deal with stress. I do a lot of mindfulness and meditations. The one that I do that helps me with my own mental health issue is a mindfulness activity. It’s really simple. I just take some time out to look for something that I can touch. So if I’m sitting at my desk and I’m feeling a little afraid I will close my eyes and reach out and touch a pencil. Then I open my eyes and focus on something red. Then I will look for three things that I can smell. I will focus on three things that I can hear. It’s kinda methodical, having that procedure in place. It brings you to a very peaceful place.

TRAYLOR: My peer network, other people living with HIV, helps me. And being in mental health therapy is another tool in my toolbox. I talk on social media a lot. I structured my social media platforms around my diagnosis to create awareness and to bring some normalcy around HIV. Most of the people I see on my social media platforms are people I know in real life. Many of them I went to school with or I have worked with, so they are connected with me in some form or fashion. And even if I don’t know them in real life, the honest conversations I have with people about HIV and the responses I get back are a part of my support system. I don’t complain on social media. I express myself. And people can relate to me.

We are all moving through volatile times between political unrest, racial and gender oppression, multiple public health threats, and so on. What is your best advice for people who are living with HIV and are trying to keep their heads above water?

TRAYLOR: You can get through hard times. Listen to other people’s stories that are parallel to yours so you don’t feel isolated. This will get you closer to healing. Don’t allow someone else’s rejection to deter you or tear down your worthiness.

KERR: Take time for yourself. It can be a mental health log, meditation, group support, or meeting with a therapist. If you don’t take care of yourself, no one else is going to do it for you. Take your meds. You get burned out taking these drugs, and so you say ‘I’m not going to take them tonight,’ and then the next thing you know it’s a month later. That leads to another problem you don’t want to have.

KELLIE: Go to all of your medical appointments. Make sure that you have a good network of friends and family to turn to. Take your medications exactly as directed. That’s going to keep you healthy. Skipping doses happens a lot when you’re in stressful situations where you have a lot going on. Keep yourself educated so you won’t be afraid. 

Take time for yourself. It can be a mental health log,  meditation, group support, for meeting with a therapist.

CANDACE Y.A. MONTAGUE is an award-winning independent journalist based in Washington, D.C. She has been covering HIV/AIDS along with other health topics for over a decade.