I Went for a Routine Blood Test at 21—What Came Next Changed My Life

Newsweek

2 days ago

Based on facts, either observed and verified firsthand by the reporter, or reported and verified from knowledgeable sources.
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Perhaps the last thing that Ellie Harrison, now 28, expected to be told by nurses after using a routine at-home STD testing kit was that she had HIV.
Harrison, who was 21 at the time, showed neither signs nor symptoms related to the virus, and was in a long-term relationship. Young and carefree, Harrison had rarely given her health a second thought, and was "shocked" to learn that she had contracted HIV without even knowing.
While the result may have upended her personal life and made dating "a minefield," it has also transformed her into one of the the U.K.'s most visible young HIV activists.
Harrison says that although her social life has become much more complex, her diagnosis has empowered her to speak out about the virus and the misconceptions around it.
From left: Ellie Harrison smiles while sitting at a restaurant dining table; and takes a mirror selfie in her bathroom.
From left: Ellie Harrison smiles while sitting at a restaurant dining table; and takes a mirror selfie in her bathroom.
@elliestayingpositive
"I suffered with a lot of self-stigma in the early days due to my lack of understanding of the virus," Harrison, who is based in Manchester, England, told Newsweek. "I now refer to my diagnosis as one of the best things that could have happened to me.
"I've been able to ignite a passion for public speaking and activism, which I don't think I would have otherwise found."
Over the past seven years, Harrison has reframed her diagnosis from a setback to a calling. She began publicly sharing her story under the handle @elliestayingpositiveonline, where she uses social media platforms to break down misconceptions about HIV, discusses medical facts, and speaks frankly about relationships and self-image.
But while Harrison has found purpose in her activism, dating has been a more challenging arena. She has remained single since her diagnosis, a decision shaped less by choice than by the reactions she sometimes encounters.
"Dating with HIV has always been a bit of a minefield," she said. "You can never judge what people's reactions are going to be like, and how that could make me feel."
Although she has learned to be open and informative in her interactions, Harrison says many heterosexual people still know very little about HIV. This knowledge gap is often filled with fear, judgment, or outdated assumptions—particularly when it comes to women.
HIV, or human immunodeficiency virus, is a virus that attacks the body's immune system. If left untreated, it can lead to acquired immunodeficiency syndrome (AIDS), the most severe phase of the infection.
Unlike some other viruses, the human body cannot get rid of HIV completely, but it can be controlled with proper medical care.
Living With HIV
"In the early days of my diagnosis I struggled with a lot of stigma, often met with confusion that a young woman could have contracted a virus, and it often led to questions around promiscuity," she said. "Unfortunately, I don't think the stigma has moved along much since the 1980s, especially within the heterosexual community."
Harrison now works to combat that stigma by educating others about the realities of modern HIV treatment and prevention. A key message is U=U: undetectable equals untransmittable. This means that people who are on effective antiretroviral therapy and maintain an undetectable viral load cannot pass the virus on.
"For me, I think it's important we educate everyone about the advancement of HIV medication," she said. "Removing this fear will hopefully make it easier for people living with HIV to talk more freely around their status.
"An HIV diagnosis isn't the end, it is just the start of a new beginning."
Alongside fighting misinformation, Harrison hopes to shine a light on another overlooked issue: the low rates of HIV testing and prevention among women in the U.K. In 2023, women accounted for 44 percent of new HIV diagnoses globally—but women represented only 3.1percent of people attending specialist sexual health services who initiated or continued use of PrEP in England in 2023. PrEP is a drug taken by HIV-negative people that prevents HIV infections.
"We should talk more about the lower uptake in women taking HIV tests, or HIV prevention treatments," Harrison said. "Sex is often quite the taboo subject, which I think goes hand in hand with women having a strong aversion to going to STI clinics or testing in general."
Harrison believes some of the blame lies with healthcare providers, who may not consider women at risk and therefore fail to offer them appropriate testing or prevention options. That lack of engagement leads to later diagnoses, which can have serious health consequences.
She also pointed out that many women who are diagnosed with HIV feel pressure to keep their status a secret by brushing it under the carpet. She wants to change that by modeling a life not of shame or fear, but of achievement, fulfillment and happiness.
"I'd like to use my voice to show women that there is nothing to hide or be ashamed of following a HIV diagnosis," she said. "I may have been single since the day I was diagnosed with HIV at 21, but I have also graduated from university with a first-class degree.
"I have developed a very successful career and as an HIV activist have been offered incredible opportunities."
Her accomplishments are not limited to her professional and activist work, as Harrison has also maintained a "wonderful" relationship with her parents, who have supported her throughout her journey.
"I've also started living alone, met some incredible friends, and for the most part I've been really happy," she added.
Harrison gained more viral attention on TikTok in April, after poking fun at her diagnosis in a lighthearted manner. The short clip has racked up 1.1 million views to date. She said she has been "blown away by all the support" and welcomes honest dialogue, even if it occasionally includes harsh opinions.
"There's always going to be people who have harsh feelings around dating someone with HIV," she said. "But I often find they aren't the type of people I'd get on with much anyway, so it's not much of a loss."
New Hope for HIV
What drives her now is creating a world where young people, particularly young women, feel confident enough to take an HIV test and informed enough to live openly and fully with a diagnosis—knowing that it does not need to define them.
"I absolutely love seeing other young people living with HIV speaking out," she said. "It's important to me that the media works to represent all different types of people living with HIV, whether that be sexuality, gender or race.
"I think it's important to normalize HIV in the same way as other medical conditions, because if treated correctly, it can't be passed on and does not need to be a huge part of your life."
In January, infectious disease experts spoke with Newsweek about HIV treatments and a potential vaccine on the horizon.
Molecular virologist Jonathan Ball, deputy vice chancellor at the U.K.'s Liverpool School of Tropical Medicine, told Newsweek: "The major advances have been in simplified and/or long-lasting antiretroviral regimens, which can also be used to prevent infection."
Antiretroviral medicines work by preventing the virus from replicating in the body, allowing the immune system to repair itself and preventing further damage.
People who use antiretroviral medications can reduce the viral load of HIV in the body to undetectable levels, which can stop them from passing it to others.
The 2024 breakthrough of the year, according to the journal Science, was with the drug lenacapavir, an antiretroviral medicine that performed very well in scientific trials.
Dr. Robert Hopkins Jr., medical director of the National Foundation for Infectious Diseases, told Newsweek: "This fall, a trial was published comparing the drug lenacapavir, injected once every six months, with a daily oral combination pill to prevent HIV infection in women in Africa.
"The trial was a tremendous success and showed dramatically lower HIV transmission than with the oral drug," he added.
Hopkins said that lenacapavir was expected to be reviewed by the U.S. Food and Drug Administration this year, with the potential to dramatically reduce HIV infection.
"This will be a critical next step toward stopping HIV transmission, perhaps not in 2025 but hopefully in the near future," he said.
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