Callum Lea was 19 years old when he learned he had HIV.
He’d recently moved from Cheshire, England, to Cardiff, Wales, to attend university.
“I’d been in Cardiff for just under a year, and I felt like I’d almost failed that first hurdle,” Callum told Healthline. “I was beginning my adult life and starting to put myself out in the world, and then was I hit with this. At the time, I didn’t really know anything about HIV. The word ‘HIV’ just sounded like a death sentence to me.”
Now, nearly 10 years later, Callum is thriving. He’s working as a medical secretary for the National Health Service while studying to become a counselor.
“In the past few years, I’ve re-evaluated my life and started to ask: What more can I do?” he said. “Because for a long time, my goal was to just get through to the end of the week. To look any further than that was overwhelming.
“But now, I have goals. I have things I want to achieve. And there’s no reason why I can’t do these things.”
Like many people with HIV, Callum takes antiretroviral medication that has reduced the virus to undetectable levels in his body. He takes a pill once a day and attends regular checkups to ensure that the virus remains undetectable.
When HIV is undetectable, it’s untransmittable. It can’t be passed from one person to another through sexual contact. Reducing HIV to undetectable levels also protects against life threatening complications, which allows people who receive treatment for HIV to lead long and healthy lives.
“I think people still have that misconception that it’s a ‘gay disease.’ And you know, if it happens to a straight person, ‘I feel sorry for them,’ but if it happens to a gay person, ‘Well, they should have known better.’”
— Callum Lea
Even with these advancements in treatment, researchers have found that receiving an HIV diagnosis is often traumatizing. Many people with HIV contend with stigma, which can negatively affect their sense of self and well-being. HIV-related stigma can also make it difficult for people to disclose their HIV status to friends, family members, and other community members.
For queer men like Callum, that stigma may be compounded by homophobia.
“I’ve had a lot of negative attention since I was very young. I’ve been jumped before, I’ve been attacked, I’ve had customers be really rude and disrespectful to me,” Callum told Healthline. “So for me, it was like, once bitten, twice shy. I had this awareness that if I was public about the HIV, there could be a lot more negative attention to come.
“I think people still have that misconception that it’s a ‘gay disease,’” he continued. “And you know, if it happens to a straight person, ‘I feel sorry for them,’ but if it happens to a gay person, ‘Well, they should have known better.’”
Callum chose not to disclose his HIV status to most of his friends and family members for years after his diagnosis. He told Healthline that he didn’t know anyone who was living with HIV while “fully accepting themselves and thriving in life,” which made it difficult to envision a positive future for himself or talk about it with others.
He dropped out of university, feeling overwhelmed and isolated. He got a job in retail as a makeup artist and lived paycheck to paycheck, earning money for rent while seeking some sense of normalcy.
He was reluctant to get into a relationship. And when he eventually did, he found it hard to advocate for himself.
“I got into that relationship and lost myself even further, I think because of how I felt about myself,” he said. “I felt like I had a lot of baggage. I didn’t feel worthy, and so I would accept the bare minimum. I didn’t respect myself enough to hold my boundaries and really stand up for my worth. I really hit rock bottom.”
When that relationship ended, the COVID-19 pandemic was in full swing. Callum moved out on his own and found himself leading a quiet life, with little to distract himself from the grief and fear he’d been living with.
“It was the first time that I’d been in complete silence, and that was the scariest,” he recalled. “I think I’d always been so busy and occupied myself so I didn’t really have to think about a lot of stuff,” he recalled.
“I had such fear of people knowing and what they might think — of what really owning my HIV status could do to my life. But actually, I wasn’t really living a life at all.”
“Talking with other HIV-positive people, hearing their stories, and understanding the significance of undetectable = untransmittable helped me to see light at the end of the tunnel, which was extremely encouraging on my journey to self-acceptance.”
— Callum Lea
Callum realized that he needed to make a change. His doctors had been urging him to reach out for support from the Terrence Higgins Trust (THT), a charity that provides HIV and sexual health services across the United Kingdom. He finally felt ready to accept the help that was offered.
“I started getting therapy through THT, and it was the best thing that I ever did. It truly changed my life,” Callum said. “Counseling gave me a safe space to tackle my own self-stigma and find acceptance in my [HIV] status, with support from someone who specialized in the common struggles faced by people living with HIV.”
Speaking honestly about his experiences and fears was an important step in taking control of his life, he said. He also took part in group therapy and other support services that allowed him to hear from other people with HIV.
It was the first time in years that he felt “normal.”
It also helped him recognize the great potential that life with HIV could hold.
“Talking with other HIV-positive people, hearing their stories, and understanding the significance of undetectable = untransmittable helped me to see light at the end of the tunnel, which was extremely encouraging on my journey to self-acceptance,” he told Healthline.
“I was able to hear other people’s stories. Like, their dating stories and that some people were married and some people had kids. That was something that I’d completely written off for myself, and so to come into a space where people had something positive to say about it? It was overwhelming.”
As Callum’s self-acceptance grew, he felt more ready to share his story with other people and disclose his HIV status to friends and family members. He acknowledged that not everyone can safely disclose their HIV status, but for him, doing so was a source of relief.
“Fortunately for me, disclosing my status made my bonds with my friends and family that much stronger,” he said. “A huge weight was lifted when I came out publicly. I was finally able to show people the real me, flaws and all. I was finally able to let people close to me again.
“It also opened up a conversation around HIV. I was able to educate people in my wider circle and community about HIV. It let people know that if they were struggling themselves or knew someone who was, that they had someone they could turn to for support.”
Coming to terms with his HIV status opened up a whole new world of possibilities, Callum said. It gave him a sense of freedom to take more risks in life and worry less about failing.
He left his job in retail to find work in the healthcare sector. He returned to school, inspired by his own experiences with therapy to become a counselor. He also bought his own apartment, which has granted him a sense of greater independence and security.
“When you’ve lived in fear for so long, the small things don’t seem to bother you anymore like they used to. The risks don’t seem as much of a risk anymore. You’ve got one life to live, and I spent far too long not living mine,” he said.
“Now my priorities are different. My priority is me. I don’t want to survive anymore, I want to thrive. I want to live. The future is bright, and I work every day to make sure of that.
“I’ve also made time to open up my heart again,” he continued. “With full transparency about my status, a lot of patience on their side, and lots of open communication, it’s allowed me to feel equal and safe in a relationship.”
Callum recognizes that people with HIV have different life experiences, and he hopes that sharing his own story will help others on their journey toward self-acceptance.
He encourages people with HIV to accept the guidance and support that’s available. He encourages loved ones of people with HIV to offer support while having patience for the challenges that some might face in accepting it.
“Offer your support, but allow the person to use their own autonomy to accept the help. So much control of your life is taken away when you are diagnosed [with HIV], and it’s important to let someone have control over who they tell and how they move forward,” he said.
“I always had a support network and amazing nurses and doctors, but I had to come to terms with how and when I could accept the support offered. To accept help and think you need help can make people feel very vulnerable, but allowing yourself to be vulnerable is one of the strongest things you can do for yourself.”
Callum Lea is a 28-year-old makeup artist, medical secretary, and counselor-in-training who lives in Cardiff, Wales, UK. He has been living with HIV for 9 years. As a patient advocate, he has shared his story through multiple media outlets, as well as the Terrence Higgins Trust’s “My HIV Doesn’t Define Me” video and resource series. He hopes that by sharing his experiences with HIV, he can help other folks living with HIV feel less alone while coming to terms with their diagnoses.