Family, culture and current events—the complexities of being Latinx and living with HIV

Right now, I am going through a depression. Like many people, the daily stresses of life can be tough to navigate. In an average year, things would be okay for me, but these past two and a half years have been anything but average. The uncertainty of the global pandemic, the clear indications of climate change across the world, the never-ending political instability in the U.S., inflation affecting prices everywhere, racial divisions permeating our everyday lives—the list can go on. But no matter how long this list is for you, at the end of my list you can add: I am partially employed without benefits, I’m the caretaker of my disabled older brother—and finally the cherry on top—I am a mixed-race Latinx middle-aged gay Puerto Rican openly living with HIV. Even with all these added stressors and with my ongoing functional depression, I consider myself lucky and privileged because I see every day what life is like for some of my Latinx brothers and sisters living with HIV. 

My overbearing Mami, who was smart without formal education, practiced stoicism and taught us that there are always other people who have more difficult situations than we do. She instilled in us that we should always help others when we can. When it comes to HIV and the Latinx community, there are many issues that aggravate an already intrinsically difficult situation. HIV is still treated in the Caribbean and all over Latin America the same way it was treated back in the ’80s and ’90s, where stigma, misinformation and discrimination still permeate. Many factors contribute to this: poverty, lack of sexual health education, religion, patriarchal society, and LGBTQ discrimination. HIV is still a taboo subject treated like a poor telenovela subplot. I spoke to different Latinx friends living with HIV, to mental health professionals, and did my own research in preparation for this story. With their permission I will discuss some of the wisdom they provided during our conversations. These are real-life examples of some of the difficulties we experience regarding HIV and mental health within our Latinx identities. In order to safeguard their privacy I will use general descriptions. 

HIV stigma impacts healthcare access 

Understanding the Latinx community takes a lot of work because it’s hard to generalize about our communities when we come from so many different backgrounds and traditions. One thing that is universal among all of us is HIV stigma. When someone is newly diagnosed with HIV, they need loved ones and people who can provide emotional support. This means disclosing their HIV status to their family and friends, which can be one of the most difficult decisions Latinx people living with HIV will face. It took me six years to disclose to my family. Once I did, they begged me not to share it with anyone else. Consequently, it took me 15 years to publicly come out of the HIV closet. I was tired of living lies and stressing over people “finding out” about my status and outing me at my job. As a school teacher, I was constantly on edge trying to hide my status from everyone, in fear of reactions from uneducated parents or co-workers. Once away from the school system, I felt comfortable enough to “come out,” in part because I became an advocate and needed to live authentically. This is not the case for many Latinx people.

I was tired of living lies and stressing  over people ‘finding out’ about my status  and outing me at my job.

One of my Puerto Rican friends did not get tested for HIV for four years. Although he is openly gay, his primary care doctor would not bring up his sexual life during his visits. Nor did my friend, since he doesn’t really “trust” the healthcare system. It worked for both of them to avoid the issue. When his results came back, he was diagnosed with AIDS because his T cell count was just below 200. That’s hard news for anyone to hear, but he was convinced he could not disclose to his family, as they are devoted religious people and he fears their reaction will damage their relationship forever, especially among his younger family members. He has literally no one else he feels comfortable talking to about his HIV status, except for me. His doctor suggested he go on antidepressants and begged him to “read and get educated about the current science of HIV.” After five years, he still has no one he really speaks to about his status, not even a therapist. 

According to the U.S. Surgeon General, approximately 1 in 10 Hispanics with a mental disorder receives mental health services from a general health care provider, while only 1 in 20 receive such services from a trained mental health specialist. My friend suffers from anxiety, depression, guilt, shame, and self-doubt. A successful man with access to the best healthcare corporate America can buy gets no real support from his doctors, his family, or close circle of friends. Now, imagine people who do not have access to healthcare due to their immigration status, or are transgender, nonbinary, or gender nonconforming, or are of other groups whose social, political and economic marginalization also keeps them without health care coverage or with few culturally competent providers.  

Using substances to cope with an HIV diagnosis 

In college and away from his family, this 25-year-old man newly diagnosed with HIV is an attractive Latinx guy living in South Florida, where many drugs, including methamphetamine (crystal meth), are readily available. He started using meth as an escape from the new HIV reality he was facing alone. Although he disclosed to his family and friends, he felt unsupported by them and hopeless about his future. By his 28th birthday, he had dropped out of college, was using meth regularly, couch surfing for weeks while on meth-benders and forced into sex work to keep up with his addiction. He decided to stop using drugs after he was drugged and raped by multiple men during a sex party. He woke up naked on a park bench near Miami with no possessions, no phone, no shoes, nothing. He is still grateful that he was not a victim of something worse. Yes, he is grateful for something most people would consider an unthinkably damaging experience. Ultimately, he moved back to his country of origin where he says he has found connection to community and friends. These human connections have helped him regain a sense of normalcy. His recovery is ongoing. Although he stopped using hard drugs, alcohol is his new escape, and it’s easily accessible. He still struggles, and he says being around loved ones is more important to him than the HIV-related health care he received from the Ryan White program when he lived in the U.S. 

The Substance Abuse and Mental Health Services Administration (SAMHSA) reports that in 2019, there were 8.9 million Latinx people with mental illness and/or substance use disorder (SUD) in the U.S., an increase of 3.7% from the previous year. At least 63% of those experiencing either SUD or mental illness go without treatment. These numbers are likely much higher after the COVID-19 pandemic, which exacerbated mental illness and SUD in the general population with added stress and trauma. For some people, racism and the targeting of Latinx communities may add to these stressors that can increase the likelihood of contracting HIV. And if a person receives an HIV diagnosis, more mental health challenges may be piled on. 

When sexual intimacy can mean prison time 

Once you are diagnosed with HIV one of the immediate new considerations is to remember that sex and relationships are changed forever. I was in a relationship when I was diagnosed, and it didn’t survive. There was mistrust, lack of communication, and constant blame, which made it impossible to continue coexisting. Once single, I did not think I would be able to date normally again. I felt toxic for months before I could have sex with anyone. The last Latinx guy I thought I could date told me flat-out he could never date someone like me. I thought maybe I was too old, too femme, too fat, but no. He nonchalantly clarified it was because I was “too open about my HIV status. I just could never.” He was also living with HIV but could not imagine anyone finding out he was dating someone living with HIV except for a select group of people. He was from a law enforcement background and had what he described as “conservative values.” Other than that, he was a great prospect. This is a frustrating experience to have in the era of U=U (undetectable = untransmittable) and PrEP, which should have resulted in more compassion and less ignorance.

But it’s not only ignorance, shame, and stigma; criminal law makes things worse. HIV is still criminalized in some form in 32 states and U.S. territories. In these jurisdictions it is still a crime to not disclose one’s HIV status to sexual partners, and/or to “expose” someone to HIV, no matter whether you’re undetectable and can’t transmit HIV, or through an act that has no risk of transmission such as spitting or oral sex. You can still be subject to prosecution and serve prison time, and be labeled a “sex offender.” Florida is one of these states. One of my advocate friends was accused by a sexual partner of non-disclosure and reported to their university leadership and police. He was treated like a criminal despite his undetectable status and the fact they had only had oral sex. The anguish and shame brought on by this accusation has had a detrimental effect on his dating, sex life, and overall mental health. He is young and will probably recover from it well, but right now he is single, demi-sexual, and looking for a deeper connection with someone where sex is not the main focus. 

Latinx people need to be in more leadership roles in HIV organizations

This past summer John Leguizamo was publicly calling out Hollywood for the lack of representation of Latinx people in movies and TV shows. The Latinx population is the fastest growing ethnic group in the U.S., at 62.1 million, and the population is projected to double to 123 million by 2060. There is a huge need for Latinx representation in many fields, including HIV care and services.

Although Latinx people make up 25% of new HIV transmissions, national HIV and LGBTQ-focused organizations do not have the diverse composition to reflect these numbers. As a public policy and HIV advocate, I have sat at decision-making tables where I am often the only Latinx person. They say “nothing about us, without us,” but this is not the reality these organizations demonstrate with their staff, executive teams, and boards of directors. When we are missing from these organizations there’s no one to vouch for the interests of the communities we come from and the people we represent. 

Take Puerto Rico for example. San Juan is one of the cities receiving EHE (Ending the HIV Epidemic) federal funding since there are many people there who are newly diagnosed. But our island is much more than just the metropolitan capital of San Juan. Services across the island can be quite difficult to find, if they’re available at all. I was consulted by a big pharmaceutical company when they wanted to conduct listening circles with the community. Their community liaison for Puerto Rico wanted to hold one listening circle in the morning in the west coast, and another one in the afternoon in San Juan. I said this would be almost impossible to do with the same staff. They were surprised because they “thought the island was so small this could be done easily.” Then they said we could hold it in San Juan and have the people from the island travel to join us. Doing this without travel, accommodations, and a financial incentive would be futile. The lack of basic knowledge about the island was not surprising. They were not Latinx, they had never been to the island, they didn’t speak Spanish, and they had no understanding of the idiosyncrasies of our people. Is this the best way to serve our people? How can funds get to the right communities when we don’t see ourselves within the institutions that are supposed to serve us? For now, we are barely visible. 

Not everything is lost. For the past four years I have been volunteering for Latinx Plus, a network of Latinx advocates living with HIV. We aim to change the current status quo to elevate the voices of Latinx people living with HIV in the necessary spaces to ensure that we are part of the conversations that impact our lives. 

This is about Latinx people, but it’s also about all people living with HIV—it’s about all people. Anyone can suffer from mental health issues. You can be surrounded by people and still feel alone because loneliness is not about how many people you have around you. It’s about how many people with whom you share deep connections and bonds. 

One thing is clear—when we feel like we belong, we thrive. 

ALEJANDRO ACOSTA is a Puerto Rican LGBTQ and HIV advocate with over 20 years of experience in education, advocacy, and public policy. He is a writer, makeup artist, and behavioral researcher.