What a HIV Diagnosis Does to You

By Santina Russo, Science Journalist from Zurich

For many, it is the worst thing that could have happened to them. Everything falls apart, and they already see themselves dying. Others are relieved – because the uncertainty and stress of testing are finally over. Some can't believe the diagnosis at first. "How people react to HIV is very individual," says Flavian Ruff, senior physician at Checkpoint Zürich. For those who are not familiar with Checkpoints: These health centers in six Swiss cities specialize in medical and psychological care for queer individuals living with HIV. Ruff and his colleagues repeatedly witness how people must deal with a positive HIV test. What does it do to a person, and how does one accept their HIV status?

Some common things can be observed. For example, it helps at least in part if those affected were already well-informed about HIV beforehand, says Flavian Ruff. "For instance, if they know that the infection is treatable. And that under successful treatment, a person living with HIV cannot transmit the virus – and can lead a normal, long life with an untroubled sex life."

From Self-Blame to Denial

However, knowing the medical facts is just one part of the equation. "There is also a strong psychological component," says Dominique Emch, senior psychologist at Checkpoint Zürich. Many experience feelings of shame or engage in intense self-blame, for example, because they cheated or had gay or unprotected sex.

Claudia Langenegger also knows these feelings of shame and guilt. The 51-year-old journalist and illustrator from Bern has been living with HIV since August 2023. "Inside me, a whirlwind of self-blame, guilt, and shame raged. The diagnosis takes you to an unbelievably desperate place, a place you never knew existed inside of you."

Due to the negative feelings towards themselves, it is difficult for people to accept their HIV status, even if most quickly realize that they will continue to be well with treatment, says psychologist Dominique Emch. "These negative feelings can also lead to social isolation. Or they may engage more in chemsex, meaning sex with Crystal Meth, Mephedrone, or GHB/GBL to suppress their feelings of shame – and become dependent on the drugs." In the extreme, individuals fall into a spiral of guilt, dependency, and depression, leading to suicidal thoughts.

There are also people who initially deny the positive test result. Some disappear and may only reach out again later – often with psychological problems. Those who have other issues alongside HIV are often in the worst condition. For example, gay men who engage in chemsex and are addicted to drugs, or individuals who are not out and experience additional psychological stress. Or even people who have an illegal status.

Checkpoint also supports some older individuals who were diagnosed in the 1980s. "Back then, HIV was still considered a death sentence," says senior physician Flavian Ruff. The affected individuals did not expect a future and often took all their money from their pension funds. Additionally, they were automatically granted an invalidity pension, which meant they were no longer allowed to work. Those who survived are often impoverished today.

Sex Stigma, HIV Stigma

What adds to all of this: Accepting HIV in oneself is often mixed with the expected acceptance from the environment. And here, the moral stigma associated with sex often comes into play. Claudia Langenegger says: "Although I wasn't really ashamed, I still had the feeling that I couldn't tell anyone about my HIV." For half a year, she led a double life and told no one about her diagnosis. The fear of being judged was unfounded, as she later realized, but still dominant.

This stigma, associated with sex – and depending on cultural or religious context, even more with "forbidden" gay sex – creates a fear of negative reactions from others. And it has direct medical consequences, as studies show: Those who are stigmatized because of HIV are more likely to become socially isolated, depressed, and less reliable in taking their HIV medication.

The professionals at Checkpoint observe this too. Specifically, men with HIV who outwardly live as heterosexual but secretly engage in homosexual activity sometimes do not take their medication consistently because they also want to keep this a secret. "Just the thought that people might ask about the pill triggers great fear in some," says Dominique Emch. Trans people and men who engage in chemsex are also at risk of not taking their HIV medication properly. Emch has also treated patients who refuse HIV post-exposure prophylaxis (HIV-PEP) after unprotected sex because they don’t want to be seen as those who sleep with anyone and everyone. "Living free and self-determined sexuality is still not accepted in society, and that has consequences," says the psychologist.

Claudia Langenegger has personally experienced how great the contrast is with HIV between medical facts and psychosocial reality: Medically, HIV is no longer a problem with timely diagnosis, but society's new, positive image has not yet arrived. "HIV is still tied to our societal trauma of AIDS, with emotional images of death and catastrophe," says Langenegger. This makes the HIV diagnosis harder for those affected than it would have to be.

New Perspectives Through Living with HIV

In general, however, "those who are stable in life can often accept the diagnosis after an adjustment period," says Emch. In counseling, the Checkpoint professionals help their patients disentangle the feelings of guilt and individual issues related to coping with the infection and the new life situation. And finally, to understand and accept HIV as part of one's life story.

Claudia Langenegger has also benefited from psychological and peer-to-peer counseling. "One sentence, in particular, pulled me out of my deep self-blame: 'It just went wrong.'" However, to accept HIV, she needed a lot of time, self-care, support from the community, and the assurance that she would not be rejected by her environment. "You need to learn to fully accept yourself and love your inner self." Today, she sees her HIV as a gift: "Thanks to HIV, I underwent a very healing psychological process and met wonderful people that I wouldn't want to miss in my life."

From a psychological perspective, the HIV status can provide new momentum. "Through the diagnosis, one has to deal with their own vulnerability, and for many, this is an incentive to reflect on where they stand in life and what they want to change," says psychologist Dominique Emch. Some of the Checkpoint clients had previously been ashamed of their sexuality or gender identity throughout their lives. "Through HIV, they have found a way to stay true to themselves and appreciate themselves. And they feel part of a community that has already overcome and survived a lot." Many now listen more to their bodies, take better care of themselves, and experience a fresh, highly positive sense of self-efficacy. Some now pay more attention to their health, interpersonal relationships, or personal growth. "If you manage to positively confront your own vulnerability, it can be incredibly valuable and empowering."