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For HIV/AIDS patients, stress management is a significant factor in successful treatment

Fellowship Story Showcase

For HIV/AIDS patients, stress management is a significant factor in successful treatment

Picture of Leiloni  De Gruy

Living with HIV or AIDS can be an unyielding source of stress that is not easily handled alone. It takes support, activism and a strong determination to not only survive, but thrive with a disease that takes a heavy mental, physical and emotional toll.

In previous installments of this series, we examined how matters of nutrition and spirituality affect the well-being of those with HIV/AIDS. Among patients and their advocates, however, there is also a focus on their internal lives - and how stress management helps them cope with the virus.

Los Angeles Wave
Friday, May 18, 2012

Living with HIV or AIDS can be an unyielding source of stress that is not easily handled alone. It takes support, activism and a strong determination to not only survive, but thrive with a disease that takes a heavy mental, physical and emotional toll.

In previous installments of this series, we examined how matters of nutrition and spirituality affect the well-being of those with HIV/AIDS. Among patients and their advocates, however, there is also a focus on their internal lives — and how stress management helps them cope with the virus.

Precious Jackson, a treatment adherence advocate, contracted HIV 14 years ago. Around 1996, she began dating a coworker. "I remember when we started dating, asking him had he ever taken a HIV test because I knew that I was negative. He had taken two, he said. One came back positive and the other one came back negative."

She said a "red flag" went off, but "I wasn't paying attention to my intuition. I wanted to be in a relationship and he was my type of dude." And because one was allegedly positive, "I didn't bother to enforce it before we took it to the next level. I introduced condoms into the relationship and he immediately told me that he doesn't like using condoms. And because I wanted to be in a relationship with him, we didn't."

They were in a relationship for a year-and-a-half, and another incident came up where he attempted to donate blood. He informed Jackson that the blood bank wanted him to return because there was something wrong.

"When he told me that, intuition popped in again and I was like, 'There is something going on, there is a possibility that he could be HIV-positive. But, I was scared and I didn't want to know because the only thing I knew then about HIV was that you die. I didn't want to die."

Not long after, he was incarcerated and the news was confirmed via letter. She went to get tested, and it came back positive. "I was devastated, of course," she said. "I thought women such as myself don't acquire HIV because I am heterosexual, an African-American woman, have never done drugs, never was promiscuous. The only thing I did was get in a relationship and trust this man who I loved to be honest with me."

At first, she said life was very stressful. She was depressed. And although she did not reduce herself to staying in bed, mentally she battled with having the virus. "I couldn't believe this was happening to me," she said.

Things turned around in 2000 when she participated in a support group at Women Alive. By the following year, she was an employee, going from a peer advocate to a treatment advocate to a treatment adherence coordinator.

Yet, the news kept coming. Last year, she found out that her ex had known he was HIV-positive long before they began dating.

"I'll tell you how good God is. Forgiveness is always good because if I hadn't forgiven that man it would have been on," she said. "I was upset. But the work that I am doing now is fulfilling because once I had accepted the virus I made a vow to myself and God that I would tell my story so that another woman, particularly Black women, wouldn't have to walk in the same shoes I'm walking in. If I can save a life, then my work is not in vein. It's rewarding to be able to give back."

Now very active, the treatment adherence coordinator also holds educational workshops where she tells her story to at-risk women, educates them about the virus, addresses risk factors, incorporates self-esteem building components and reminds them to "follow their intuition, because that's God leading us out of danger."  

Darryl Hendrix, who has been HIV-positive for 22 years, is a seemingly spirited guy with so much vibrancy. His warm smile and outgoing personality draws you in. But it took time, therapy and being involved in social networks.

During his interview with The Wave, Hendrix spoke lightly and briefly about his past, and at one point laughed, saying "you're trying to get me back to that bad place."

It was a place he would rather forget. However, five years ago when featured in AIDS Project Los Angeles' annual report it was a different story. He relived memories that haunted him.

For a year, his family was unaware that he had been diagnosed with HIV after enrolling in a research study at County-USC Medical Center. They were seeking qualified candidates to test an experimental drug aimed at treating high blood pressure.

No more than three weeks in, a nurse pulls him into a room where she informs him that he cannot participate in the study because he was HIV-positive. The news was devastating. At the time, he was a 31-year-old married father of two. He was also gay.

"Even though I kept quiet, my family suspected," he told APLA. "When I was young, my dad called me a 'homo.' It was the worst insult I could think of." And when his peers would use such words, he unleashed his frustration out on them because, "I couldn't hit my dad, but I could hit them."

In an attempt to hide his sexuality, he married at 19 and had children. But throughout, he privately engaged with other men. He said leading the double life was causing his stress to mount and his blood pressure to skyrocket, which led him to apply for the study that eventually became the catalyst to his status being revealed.

When he finally mustered up the nerve to then unveil the news to his family — his mother's health was failing and he wanted to come clean — tragedy struck. The next afternoon, his mother passed away.

Hendrix said he believed it was his fault. His body could not stand the compounding stress, and weeks later he attempted suicide twice. When that didn't work, he turned to cocaine. It wrecked havoc on his body, and he eventually suffered a stroke.

At the behest of a nurse at the hospital where he was taken, Hendrix began seeing a therapist at APLA's Pacific Center, which is a program composed of licensed marriage and family therapists who offer free weekly psychotherapy sessions.

He was able to get clean, and as a result he was able to obtain subsidized housing. An APLA housing case manager helped him locate a Hollywood apartment.

It was therapy, support groups, accessing resources at APLA and using his voice to tell his story and prevent others from taking his path that have allowed him to keep going on.

Today, Hendrix still has some blindness and his face is slightly drooped as a result of his stroke. But his relationship with his family — including his ex-wife and children, none of whom contracted the virus — has blossomed. "I'm happy," he said. "I'm alive."

LaVera Anom, who has been HIV-positive for a decade, found out she was infected when she went for a pregnancy exam. She was out of the country and had just gotten married to her husband in his native Nigeria. While there, she began experiencing pregnancy complications, which caused her to be admitted into the hospital for several weeks. Once healthy enough to take a flight back to the states, it was no more than 48 hours that her feet were on American soil before she was back in the hospital again. She had placenta previa, where the placenta grows in the lowest part of the uterus and covers all or part of the opening of the cervix.

Since they had been conducting tests, a nurse asked if she would like to take an AIDS test. She consented, and two weeks later she received the call of her life. Anom thought there were complications with her fetus, but when they sent her to the infectious disease clinic she knew something was gravely wrong. She had been infected with HIV.

"A lot and nothing," she said of what went through her mind when she learned of the results. "The initial thing was 'OK, what now?'"

After answering questions, the nurse informed her that she had symptoms of the virus, "but because the symptoms of HIV and some of your routine illnesses are so close I was being treated for a year-and-a-half for different things. No one thought to ask me if I wanted or needed an HIV test because I hadn't been sexually active in two years. The last partner I had before my husband was the one who infected me."

She was "shocked," she said. "I started crying as I sat there because it really hit me." Thinking back, Anom said she had a fungal infection underneath her breasts that was difficult to get rid of, recurring sinus infections, she began to develop allergies, her eczema flared up, and two big lumps had developed behind both ears.

"No one caught it," she added, noting that her viral load had more than tripled. "My immune system had been damaging for a while."  

Initially it was closed topic and Anom would not discuss it with anyone for years, not even her family. "I just took my medicine and took myself to the doctor," she said. "I still lived my life as though I wasn't HIV positive even though I was taking medication every day for it. I was living in the house by myself and I still  hid my medicine even though no was here but myself and my son."

Anom shielded herself from the outside world, but in doing so she fell into a huge bout of depression. "I cried every day for the first two years of knowing that I was HIV positive," she said, noting vividly that her tears began Sept. 10, 2004 and lasted until May 2006.

On a doctor's visit, she met a woman with a granddaughter who had been prenatally infected. The woman asked her to join the Los Angeles Family AIDS Network, and Anom ignored the request several times, until 2006.

However, "what made me stop crying is that I went to a conference put on by AIDS Alliance for Children, Youth and Families. … I had an opportunity to meet a whole lot of people. The whole two bottom floors were filled with people like me from all over the world. From there, I didn't cry anymore."

It took some more easing into. "I still wouldn't receive services," she added. That is, until APLA got a hold of her. As part of completing her bachelor degree, Anom took an internship with the organization — she didn't tell them she was HIV positive. She was referring people to food banks and assisting them with housing, both things she so desperately needed. Anom had enough and chose to open up to the staff. Her needs were met, and it was the first step to becoming active.

Since then, Anom has continued to work with APLA, attend AIDS walks and participate in forums around the world. She said she still suffers from depression, sees a therapist and finds it difficult to get out of bed in the mornings and be in social settings. But when she is with people like herself and voicing her story and potentially saving the lives of those at risk, she "feel[s] alive" and regains a spark that often seems lost.

These were stories of tragedy that turned into hope, but still "too many today are living with this disease that are isolated and are alone because they can't disclose or don't feel comfortable disclosing to their families," said Jackson.

This reporting was undertaken as part of The California Endowment Health Journalism Fellowships, a program of USC's Annenberg School for Communication & Journalism.