What HIV stigma feels like. And, what it’s like to be free.
For six years, Esther Kim let fear rule her life.
Six years after she was diagnosed with HIV, Kim realized that she would live longer than her initial prognosis of 10 or 15 years. That’s when she decided: “If I’m going to live, this isn’t the life I want to live.”
Kim was surprised by an HIV diagnosis in her mid-20s, when an ex-fiancé called from travels abroad to say that he was HIV-positive and warn her that she should be tested. She was astounded when her HIV test came back positive, and angry. But mostly, she was afraid.
She kept her HIV status hidden from friends and family, eschewing social support out of shame, fear of rejection and worry over disappointing the people close to her. She accepted HIV care, from a doctor not accustomed to meeting the needs of women, out of fear of running into someone she knew at a women-serving clinic. She refused HIV medications out of fear that someone might see her medication bottles. She nearly refused hospitalization when she was in critical condition over fear that people would find out she was HIV-positive. And she stayed in a relationship, that wasn’t working out, over fear that nobody else might deem her a partner worthy of love.
HIV stigma was holding her back, and Kim wanted that to change.
One of the first things she did was to see a therapist, who helped her connect with her emotions and find the words to express how she was feeling. “It took me an entire year to say to my therapist, ‘I have HIV.’ Once I was able to come to terms with that, I was able to start moving forward.”
Kim joined a diverse, multi-ethnic church congregation and reconnected with her faith. She ran her first marathon with the National AIDS Marathon Training Program, and raised money through the event for AIDS Project Los Angeles. After running the marathon, she decided to participate in AIDS/LifeCycle, the 545-mile cycling event from San Francisco to Los Angeles, benefiting San Francisco AIDS Foundation and the HIV-related services of the Los Angeles LGBT Center. She’s now participated in AIDS/LifeCycle six times.
Completing these challenging, endurance events was a new experience for Kim, who wasn’t particularly athletic before training for the marathon. Pushing her body, and striving to finish the marathon, and then a 545-mile bike ride, was healing for Kim.
“It took my mind off of the sickness that I have. And it actually made me think about, ‘What can I do?’ instead of, ‘What can’t I do?”
As a result of the marathon and AIDS/LifeCycle, Kim’s community started to change, too. She started meeting and connecting with many other people who were living with HIV.
“It was really helpful to meet other people living with HIV,” she said. “It was one of the reasons I kept coming back [to AIDS/LifeCycle]. I could see how brave everyone was—and see how people were turning something negative into a wonderful, positive experience.”
All of these experiences put Kim on a path toward self-acceptance. “Without me realizing, I was healing,” she said. “I was finding peace in my own spirit. I began to realize, I am valuable. I do matter. Just because I have this disease, it doesn’t mean I’m no good. Or tainted. I felt all of those things.”
It took time for Kim to be able to talk about her HIV status with people other than her therapist. When she was first diagnosed, she told a close friend whose response was, “How could you let that happen to you?”
“After that, I didn’t tell anyone,” she said.
When Kim first started participating in AIDS/LifeCycle, she remembers talking to people who were living openly with HIV. “I could look at other people who were positive, and not judge them at all. But for some reason, I couldn’t stop judging myself. It was really hard.”
Kim decided to tell a close group of friends about her status after she realized that is was her own lack of self-acceptance that held her back.
“When I stopped to consider why I couldn’t tell my friends, I first thought it was because I was worried that I might be rejected by them. Or that they might see me differently. But then I thought about it, and knew my friends wouldn’t think that way. Then I realized, it was just me. I feel that way about myself. I can’t accept myself. Once I recognized that, I started to process it. And finally got to a place where I was able to have a small group of friends over for dinner, and tell them. They were really nice, and very supportive. They were glad I was doing OK.”
Around that time, Kim also talked to her sister and brother about her status. It wasn’t until this year, when Kim volunteered to share her story with the public through AIDS/LifeCycle that Kim told her mother and father.
“They were very understanding,” said Kim. “But then when I told my mom that I was chosen to talk on the ride about my experience, she said, ‘Can you use a different name?’ I had to say, ‘Remember how I told you how difficult it’s been because I’ve grown up Korean, and Christian? And felt so alone [after my diagnosis]? That’s why I’m talking about it. So someone else might not have to feel so alone.”
Read more about HIV stigma on BETA, including an HIV doctor’s take on HIV stigma and ways to stop stigma from San Francisco AIDS Foundation staff.