Straight, living with HIV, and invisible

Anyone can get HIV, including straight men and women. In 2019, heterosexual people made up 23% of all new HIV diagnoses in the United States. Straight men accounted for seven percent of those new diagnoses and straight women accounted for 16%, according to HIV.gov. Yet HIV prevention and care programs for the heterosexual community are sorely lacking. And straight people who are living with HIV are severely stigmatized and often hide in the shadows. The general public thinks that they are gay and hiding it, have a history of injecting drugs, or have been promiscuous. Following are stories from straight men and women living with HIV in the U.S. South and Southeast. They used to be invisible but have grown to become fierce advocates for their communities.

Love is love

Kalvin & Eunice Marshall

Kalvin and Eunice Marshall live in Houston, Texas. They went to high school together and married in 1984. Twenty-three years later, in 2007, HIV/AIDS entered and changed their lives. 

Kalvin was diagnosed first. He was working as a training cook for Denny’s. He trained staff on new menu items and taught new hires how to cook. He had a stroke in 2006 and became sicker in 2007. Kalvin was exhausted and was confined to a wheelchair. He “stopped eating and lost control of bodily functions,” says Eunice. He also lost the job that he enjoyed. Kalvin tried to get an appointment with his doctor, but one was never available. The couple spent an entire day in the doctor’s waiting room, only to be told that the doctor was on sabbatical, so they went home. Meanwhile, Eunice was experiencing chronic yeast infections. 

Later that year, Kalvin ended up in the emergency room. Unbeknownst to him, he was part of a pilot project to find people living with HIV in emergency room settings and he was tested for the virus without his consent. The HIV test was positive, but Kalvin did not know that. He was admitted to the hospital where one of the doctors finally told him, “You have HIV. You need to tell your wife.” Kalvin insisted that he did not have HIV and an argument ensued between him and his doctor. When the nurse entered his room, she told him he had advanced HIV disease. Kalvin immediately had a heart attack. 

When he awoke, he was in a different room, didn’t know that he was in the hospital, and didn’t know his HIV diagnosis. Kalvin asked the nurse what pills he was being given. “You know what they are,” said the nurse. “How could you do that to your wife? Put her at risk like that. Doing those things you did.” Kalvin was discharged to a skilled nursing facility (SNF) and faced the same stigma there. When he insisted that he wasn’t gay, he was told, “but we can’t help you until you are totally honest with us. This is a judgement-free place.” From his nursing home bed, he heard a staff member say, “I don’t know why he won’t come clean. We can help him if he comes clean!” No one believed that he was straight. 

Meanwhile, Eunice was consumed with worry about her husband and her own HIV status. “I saw what the virus did to Kalvin and how the staff treated him.” She was tested by a worker from the local public health department in February 2007. Health department staff were supposed to meet Eunice at Kalvin’s SNF in March to provide the results, but they didn’t show up. The appointment was rescheduled for a few days before Easter, but again the staff no-showed. Eunice finally received her HIV test results on April 17, more than two months later. “I was given no resources, no help, no support.” She was laid off from her job and they both stayed at home for a year, thinking they were going to die. The couple didn’t go see an HIV specialist. “No one told us to,” she said. 

They eventually had a relationship discussion and decided not to play the blame game. No one had strayed outside of the relationship and they agreed that one of them contracted HIV prior to their 1984 wedding. “It’s not about pointing fingers,” said Eunice. Kalvin and Eunice made the important decision to stay together. 

In 2008, the Marshalls sent a letter to their families about their mutual diagnosis. “You’re either for us or against us and we want to know which way you are.” Their families chose not to discuss it. And at the next family function, Kalvin and Eunice were served food on paper plates and given plastic utensils to use. 

The Marshalls became activists. They enrolled in Project Leap, a 17-week program at the now defunct Houston Center for AIDS. Upon graduation, they were the first couple to serve jointly on the local Ryan White Planning Council. In the council’s third year, the group wanted to focus solely on women and children. Kalvin and Eunice decided “to stir the pot” and asked, “What about heterosexual people? What about straight men?” They also wanted support for couples like themselves and were told “if you want it, you start it.” So, they did. Three years later, the group had eight couples in the support group. 

Currently, Eunice is a member of both the Houston and Texas chapters of Positive Women’s Network - USA. Kalvin is active in the Bow Tie Movement Campaign, a Facebook group for straight men living with HIV and the people who support them. And their marriage remains as strong as ever. “If you love each other, stay together. Work it out.”

A girl like her

Marissa Gonzalez

Originally from New Jersey, Marissa Gonzalez is a 32-year-old Latina living in southwest Florida who is “considered a ‘baby’ when it comes to the HIV diagnosis.” She learned about her HIV status in 2016 and went very public with her diagnosis in a Facebook post in 2018. Currently, she is an active writer for The Well Project’s blog, A Girl Like Me, and also serves on their community advisory board (CAB). She is an ambassador for both Youth Across Borders and Greater than AIDS—all while holding down a full-time job. Her journey from 2016 to 2021 has been tumultuous but powerful.

In 2016, she ended a “toxic relationship” and moved back in with her parents, brother, and niece. “At the time, I was in a one-sided monogamous relationship—he was not monogamous.” In May, Marissa went to her long-time OB-GYN, Dr. Deirdre Fisher, for a Pap smear and sexually transmitted infections (STIs) tests, just to be on the safe side. “To me, if the penis was clean, [sex] was okay with me.” She had very little sexual health education, and HIV/AIDS was not on her mind. “This won’t happen to me.” Much to her and Dr. Fisher’s shock, Marissa’s HIV test was positive. “I’m not sure who took it harder, her or me.” 

As she describes the events of that day, Marissa was waiting for her ex-boyfriend to stop by and “pick up his shit,” when she received a call from Dr. Fisher’s staff stating that the doctor wanted to speak with her. She knew that call meant that something was wrong. When her ex arrived, Marissa was running out the door to the clinic and asked, “What the fuck did you give me?” Marissa spent an agonizing amount of time waiting for Dr. Fisher to finish with her regularly scheduled patients and “Googling different STIs.” The doctor knew Marissa very well and believed her to be low-risk. She asked the lab to re-run the confirmatory HIV test several times. Each time the result was the same. Dr. Fisher said, “I don’t know how to tell you this,” and told Marissa that she had HIV. Marissa “curled into herself and started crying in the exam room like a baby. It was ‘instant depression.’” Three days after her diagnosis, Marissa attempted suicide with alcohol and pills, but fortunately recovered in the psychiatric ward of the hospital.

Her best friend had been pushing her to disclose to her family. She was feeling shaky and vulnerable and told her mother the day before the suicide attempt. Her mother immediately said, “We need to tell the family.” The rest of her family found out as the ambulance came to take her to the hospital. In hindsight, Marissa wishes she had “taken more time” before disclosing. “This felt rushed to me.”

Once she was released from the hospital, Marissa returned to her family’s home. She went back to work at her events job and coincidentally started working on a youth HIV/AIDS awareness program for the McGregor Clinic in Fort Meyers, Florida, where she eventually became a client. This was only seven months after her own diagnosis. She worked hard to make this event happen, but chose not to disclose her own status. Marissa was invisible at her own event. “I tied a lot of HIV events back to my work, so they couldn’t be tied back to me personally. [As far as they were concerned], I was doing it for the youth of my community.”

In 2017, she organized “Ribbons and Tiaras,” an HIV awareness event for women and girls. “While I was very visible while wearing my organizer hat,

I was very much invisible as the girl living with HIV. I used the opportunity to educate the community but hid behind my title.” In 2018, she shared her HIV status on Facebook and was pleasantly surprised by the reactions. Most of the responses to her post were supportive. “It was nice and different to see.” 

She began working at the McGregor clinic and desperately wanted to attend the 2019 U.S. Conference on HIV/AIDS (USCHA) but could not as she was a new hire and other staff had priority. And then COVID hit in 2020. As of the writing of this article, Marissa has yet to meet another woman living with HIV in person. She has only met them online. She is eager for live, in-person conferences to happen again. How will you find her at the next conference? “I’ll be wearing a t-shirt that says ‘hug me.’”

Shawn Mark

Not all heroes wear capes 

Shawn Marks is originally from Florida but currently lives in Nashville, Tennessee. He acquired HIV at birth (known as perinatal or vertical transmission), and was “within three weeks of turning three” when he was taken in by a foster family. “They were the first set of people I did stigma work on.” The family already had 12 foster children and didn’t want to take on another but they accepted him once they learned of his HIV diagnosis. He had been living with his biological mother up to that point. He does not know who his biological father is; there was no name on the birth certificate.

Shawn was six years old when his foster mother took him aside and explained HIV. “It was a cool disclosure. She doodled what T cells and the virus looked like”. But she also told him, “Don’t let your blood touch other people’s blood and don’t share this information with anyone.” Six-year-old Shawn decided that his HIV made him a “superhero, like [Spider-Man’s alter ego] Peter Parker.” 

But even superheroes can experience stigma. “On paper, I sound like a terrible person.” In kindergarten, he nipped another boy when they almost collided in line. The nip didn’t break the skin and Shawn was merely “being a little boy.” But he was suspended for a week. In third grade, he was suspended again for another week. During his art class, he was playing a game of thumb war with a friend. The other boy dug his thumb into Shawn’s hand and Shawn bit him in response to the pain. He attributes both suspensions to HIV-related fear. After that, he was assigned a special aide which resulted in him getting bullied by the other students. 

Then, his foster parents decided to enroll him into private school. “It was at a church and was like being home schooled, but under a church roof.” There were only 36 students in the entire school. His foster parents were Southern Baptist but the church school was Pentecostal. That was a big difference.

Shawn “wasn’t allowed to play contact sports, so I filled my extracurriculars with other things” like real life work experience and music. “I overheard that I was supposed to have died already, my attitude was, do what you can. Tomorrow may not happen. I probably wouldn’t live long enough to go to college.” He worked as a bag boy at a local grocery store and helped his foster father with his plumbing company. He was also a DJ for the local roller rink, Skate Station. While he DJ’d, “no one knew that I was freaking out in private.” 

He doesn’t really know when he started HIV treatment. When he was a little boy, he had to take “cough syrup” that he assumes was AZT. “It tasted disgusting.” His foster father once tried his liquid Norvir and said it “tasted like gasoline and pennies” while crying at the dinner table. “We’ve got to get Shawn off of this,” he said. 

As Shawn got older, he says he became interested in girls and wanted to start dating, but was instructed by his foster parents not to “get caught up in a future partner or wife.” He wasn’t expected to live long enough for relationships. But when he was 15, “there was a pretty redhead in church. We courted for a few months and then dated for a few months.” His parents knew he was dating, and his girlfriend and her parents knew about his HIV status, but he didn’t know that they knew. Consequently, they were all waiting for him to disclose his HIV status to her. “She was tired of me not telling her, so she ghosted me before that was even a thing.” Shawn tried to commit suicide after she vanished and was institutionalized in the pediatric wing. “I felt bad. I felt terrible. I stopped taking my [HIV] meds then. I figured I would just fade away.” This was one of several suicide attempts. 

Shawn’s relationship with HIV medications was already complicated. “I got in the habit of not taking them. I’d only take them occasionally. Out of sight, out of mind.” Eventually, he became resistant to many HIV medications. He describes his drug-resistant HIV “like a king cobra that eats other snakes.” 

When he was discharged from the psychiatric institution, he returned to the Pentecostal school where the congregation and students were encouraged to speak in tongues. As a Baptist, Shawn did not want to do that, so he offered to help behind the scenes with sound during the services. This eventually led to sound mixing which led to roadie gigs across the country with rock bands, including two years with the Drive-By Truckers.

But the rock and roll lifestyle intensified Shawn’s teenage experimentation with alcohol. He started drinking at 18, but now hard drugs were easily accessible. “If someone asked me if I wanted drugs, I would say ‘yes.’”  But when he had sex, “it was always protected. And that’s because I was that superhero. I had a responsibility that I didn’t ask for.” He also had many “discussions with God. Why this? Why me?” 

He was running away from himself and his HIV and moved to different cities and states, drinking and using drugs. As he bounced across the U.S., he experienced homelessness and was arrested. Finally, he got very sick and was admitted to a hospital. He was “24 years old and only had six T cells.” The doctor told him that he had AIDS. Shawn’s response? “No I don’t. I have HIV.”

Shawn took a Greyhound bus to Nashville from Melbourne, Florida. He landed at Nashville Cares, a local AIDS service organization (ASO), “ready to kill myself.” He became a client of Nashville Cares and started going to 12-step meetings. “I dug deep into the Alcoholic Anonymous (AA) rooms.” Relatively new to the recovery community, there was a chairperson opening in his group. He thought this only involved “setting up and taking down chairs” before and after every meeting. It turned out there was more responsibility involved! (A chairperson describes the program for newcomers, and introduces speakers who share their personal stories.)

Once he got clean and sober, he decided to be out about his HIV status. “I came to terms with HIV at 30 [years of age]. I had to pull the trigger on it. The only way to be okay, is to be okay.” And “U=U [undetectable equals untransmittable] was life-changing.” Shawn says he learned about it “on my deathbed but it didn’t register,” but it “registered” two short years later. He even listed his HIV status on his Facebook dating profile. His current girlfriend knew his status before they met, and it didn’t dissuade her from getting involved. She is taking pre-exposure prophylaxis (PrEP). 

The former client of Nashville Cares is now a member of its staff. He is also heavily involved in several local HIV/AIDS committees, including the Ryan White Part A Planning Council, and describes himself as a “queer ally.” His HIV status led to many people assuming that he was gay. But “every time I got in trouble, someone from the queer community saved me.” Shawn plans to continue his work in HIV at his ASO as part of the Healthy University Program. He wants to speak at conferences about his lived experiences.

And he will continue to be a superhero to all. 

Michelle Simek has worked in HIV/AIDS for more than 20 years. She works at the UCLA Center for Clinical AIDS Research and Education (C.A.R.E.) in Los Angeles and is a popular HIV/AIDS educator, both locally and nationally. In her spare time, she is an actor, fiction writer, avid reader, and enthusiastic cat mom.