As a young man who tested positive for HIV in 1987, at age 21, Robert Gillum never saw his condition as a death sentence.
“My health had probably more to do with my spiritual life than anything else I was doing,” says Gillum, now 54 and living in Virginia. “From the very beginning, I never thought I was going to get sick with HIV. I believed I was healed, and that’s how I lived.”
Gillum, who grew up in the Baptist church, credits his faith with keeping him healthy during the early days of the HIV epidemic. After watching people who took early HIV drugs become sick, he forwent treatment until 1999.
Gillum managed to keep his health intact during those intervening years. He insisted that his doctors check his CD4 T-cell count and not tell him the number but to make suggestions about they thought he should do regarding treatment. He would then decide whether to begin taking medication.
Today, Gillum is undetectable. Like many other long-term survivors, he is aging and living healthy with HIV on his own terms.
He has always been in tune with his body. When Gillum gained over 20 pounds, he suspected the HIV medication he was taking was to blame. As a result, he and his doctor worked together to switch his treatment. He is currently taking a new single-tablet regimen that hasn’t caused any weight gain or other side effects thus far.
To lose weight, Gillum exercises three times a week. In addition to cardio, he works on toning his arms and legs. “When I’m in the gym, that time for me becomes more surreal,” Gillum says. “It’s not just me trying to stay healthy physically. It’s mental, emotional and spiritual as well.”
He also drinks more water and eats more vegetables and fruits to keep himself healthier overall, especially as someone aging with HIV.
“No one was really studying how long you were going to be living with HIV,” he says. “We weren’t worried about the long-term things, but now we are.”
Aside from HIV, Gillum is worried about his cholesterol. To help keep it in check, he has reduced the amount of cheese, butter and fried food in his diet. He starts off his mornings with oatmeal and eats more baked meals.
Gillum understands that living healthy with HIV includes keeping up with his doctor’s appointments. “A lot of people don’t go to the doctors often,” he explains. “I still go once every three months. I just like being on top of my health.”
Most important, Gillum advocates for his health and encourages others to do the same. He has an honest and open relationship with his doctor about what’s happening in his life and with his health.
He’s also an advocate for mental health therapy because it changed his life. “Therapy has helped me stay emotionally and mentally healthy for the last 28 years,” he says.
“Don’t let HIV define you,” he says. “Live your life. HIV is just another virus. You can live and not allow it to dictate to you what you can be and what you can accomplish. I’ve done a lot of stuff that I never thought would happen when I tested positive in ’87.”
At age 68, Pat Migliore remembers what it was like trying to stay alive after testing positive for HIV in 1986.
“There was clearly nothing you could take to stop HIV,” says Migliore, who lives in Seattle. “It was pre-AZT [azidothymidine] when I found out I had HIV. Pretty much the mindset was that I was going to die.”
Although Migliore thought she’d live for maybe a year or two, she found solace in support groups for people with HIV. Back then, she relied on alternative medicines in hopes for survival.
“We were at a point where we would try just about anything,” she says. “And even though I was depressed and pretty worn out, I tried really hard to stay positive and not always look at the worst-case scenario.”
Despite living with AIDS since 1991, Migliore currently has an undetectable viral load, which she attributes to good adherence to her HIV regimen.
“Sometimes when I get sick—which I don’t very often, luckily—I have to try to figure out whether it’s HIV or age,” Migliore says. “Because now it’s just not HIV. At 68, some of the parts are wearing out.
While Migliore’s medication keeps her healthy, living healthy with HIV requires more than treatment adherence. It’s also about a person’s overall physical and mental health.
Migliore regularly takes walks and stretches. She drinks a lot of water and eats fairly healthy. She can’t recall the last time she’s had fast food. “I tend to cook for myself,” she says. “I don’t eat very much red meat. I’m a salad fan.”
Migliore goes to her HIV doctor at least once a year and gets lab work done every six to 12 months. When health issues arise, such as frequent bouts with bronchitis and pneumonia, she visits the doctor right away.
As a woman aging with HIV, she regularly sees her gynecologist to undergo routine screenings, such as Pap smears and mammograms.
“I’m definitely more conscientious about getting those things done because I have HIV and I’m a long-term survivor,” Migliore says. “One of the things I remember learning about HIV early on was that if you were a long-term survivor, there was premature aging that came with HIV.”
Migliore has found that facilitating and being a part of support groups for women living with HIV has improved her life. Her relationship, her dog and remaining involved in the HIV community help keep her feeling good mentally.
“It’s been kind of hard in the last year because I’m an extrovert,” Migliore says, referring to the current COVID-19 crisis in the United States. “Being lucky enough to be in a relationship has had a lot to do with my current physical and mental health.”
This year marks 26 years since LaTrischa Miles was diagnosed with HIV. In 1995, Miles never imagined she would be alive today.
“I had no idea how long I would live because I didn’t know anything about HIV,” says Miles, age 61 and living in Olathe, Kansas. “Everything I knew about HIV was about death and dying.”
Miles was determined to stay alive for her three young children. Fast-forward to the present, and she’s a grandmother and a long-term survivor with an undetectable viral load.
“I managed to stay healthy by remaining on my medication and staying engaged in care,” she explains. “I kept my medical appointments and learned as much about HIV as I could.”
In addition to HIV, Miles has diabetes, a liver hemangioma—an abnormal collection of blood vessels—and osteopenia, a condition in which a person’s bones are weaker than normal but not weak enough to be considered osteoporosis.
But it’s not just her HIV doctor she sees regularly. She also sees her primary care physician, an endocrinologist, a gynecologist, an optometrist and other health care providers.
“Unlike most populations, our doctor visits living with HIV are not annual visits,” she says. “We have a number of appointments where we need to be able to feel comfortable with our doctors because we are going to see them at least a couple times a year.”
Miles learned how to read her labs so she can effectively communicate and work in partnership with her physician and prepares for visits with her HIV doctor by writing down questions. “It’s about what works for me and my lifestyle,” she says.
She encourages people living with HIV to learn more about the virus so they can become their own best advocate.
“I feel like I’ve taken the lemons I was dealt and made lemonade,” Miles says. “I’ve made my years count. I’m a leader and advocate for the HIV community. I love working with women living with HIV. The journey has been amazing.”