In 1988, after Kim delivered her daughter, doctors informed her that she had AIDS. “I truly believe that I was diagnosed in 1987. However, I didn’t go back for my results,” a ViiV Healthcare Patient Ambassador explained. After she received the shocking news, she returned home after being discharged. The new mom resumed her life without disclosing her status to anyone. “I was literally out in the community doing things that were self-destructive and leading a lifestyle that was not socially acceptable,” Kim said.
Going to Prison Saved Her Life
In 1989, Kim was sent to prison, and she admits that the eight years she spent incarcerated changed her life. She began to take her diagnosis seriously and get on the medical protocols available to her at the time. “I wholeheartedly believe that God placed me in a place where I could heal, and that was prison. I don’t think that if I had remained out in society, I would be alive today.
At that time, there was so much stigma around HIV and AIDS. I didn’t share my status, but somehow it leaked out through someone I shared it with personally, and it was then that I started the only treatment they had available at that time, AZT,” she continued.
Although Kim would go to the medical building and hide her pills in a bag because of the bullying she experienced from other inmates. “A lot of the other inmates knew my status, and they would ridicule me and ostracize me,” the 64-year-old explained.
“There was a lot of fear. I really didn’t believe at that time that I was going to make it home alive.”
Getting Clean Was One of the Catalysts for Her
A big part of Kim’s turnaround was participating in a drug treatment program as part of her incarceration. It was a therapeutic community process that really worked for her. “I became like the head of the house kind of person, and I started to become a role model for the other women who were struggling with addiction as well,” she said.
But sharing her story also became essential. After getting out of prison, she gravitated toward organizations working with HIV/AIDs patients, but eventually got emotionally burned out.
At the same time, Kim began pursuing higher education. She had obtained her GED in prison and, after her release, enrolled in college, receiving two undergraduate and a master’s degree. Now, she works alongside her wife, running a private practice where they provide mental health and addictions counseling to adults and children.
“And, they would say things like, ‘there’s that AIDS person’. They treated me as if I were a walking infection.”
Despite these challenges, Kim began sharing her status and started a walking group for women who were HIV positive. There was a circle, and we walked around it. We would meet at a certain time and talk about our experiences and what we were going through emotionally and physically,” she recalled.
Commiting to Compliance
After leaving prison, Kim resolved to get healthy. The mother of three weighed 300 pounds when she was released. “As I transitioned into the community, I started to see glimmers of hope. For me, initially it was about survival,” she explained.
“So, it went from surviving to living, and I started to focus on my health. What I needed to do in terms of keeping appointments and staying compliant with my medication.”
But it wasn’t always easy; Kim experienced a lot of ups and downs with medications. Some drug cocktail combinations didn’t work as well as others, so her medications sometimes needed to be updated. Pills had been part of her life almost since she was diagnosed, and she was experiencing fatigue from the daily grind of it all.
Kim went through a period where the medical and medication fatigue took a toll on her. It affected my mental health, my spiritual health, and my well-being,” she said.
“I had a lot of pill holidays, breaks, where you would take holidays [from the medication],” Kim recalled. “And I can remember saying, ‘This week I’m not taking it,’ and going to my doctor, and him saying, ‘Your CD4 count is dropping, your viral load is increasing, what are you doing?’ and I had to admit that I had stopped taking my medication.
I can remember my doctor screaming at me, “You cannot do this, you have to take this medication if you want to live. And so, at some point, my mindset changed, and you know, I went from non-compliant to compliant. Over the years, I’ve managed to stay undetectable and really have healthy mental and physical health,” she said.
Witnessing the Evolving Attitudes About HIV
Over the years, Kim began to take notice of the changing attitudes about HIV and AIDS. People with the disease were living longer. Because of the advances in treatment, it was no longer associated with a death sentence. “It’s been really enlightening to see how the scope of the disease has changed from unmanageable to manageable.”
Kim has evolved from a pill or a couple of pills a day to one injection every eight weeks, which has been a life-changer for her. “There was a time when I was on a regimen where I named my pills because it was so difficult to take them, and I turned it into something funny.”
She is currently taking Cabenuva, a long-acting HIV injection administered every other month.
“It’s been so wonderful, not to have to worry about getting my prescription from the pharmacy, running out, worrying about how many pills I have left…My life is just like carefree,” she said. “HIV is still at the forefront of my life, but I don’t have to stress about what’s next. I know that every eight weeks I’m going in to see my practitioner, I’m getting my injection, and I’m moving on.”
Living with HIV For More Than Three Decades
Today, Kim is not just living; she is thriving. She has three adult children, and between her and her wife, they have 19 grandchildren. In recent years, they also became homeowners. She is not just existing; she is thriving despite being diagnosed with HIV 39 years ago next month.
What is the key to her longevity? “It’s really an individual mindset that you take on, and you kind of weigh your options and say, well, ‘if this is not working, maybe this will work.’ And it’s about making informed decisions, talking to your health care provider, educating yourself, and being open to change,” Kim said.
To learn more about the risks and benefits of Cabenuva, including its side effects. Go to cabenuva.com
Kim’s photo courtesy of Viiv Healthcare
