2023-12-01 08:00:00
Certain philosophical schools explain that nothing exists in a vacuum; everything is done only in relation to other things. And people would not escape this truth: in a certain way, we exist, we are what we are only insofar as we are perceived, we are seen, by others.
Following this logic, it is reasonable to think that the physiological is only a part of the whole that, in the eyes of others and ourselves, constitutes us. And yet, there are conditions that continue to shape how we are seen in society, with prejudices that often have little to do with reality. There is no better example than HIV.
“We are not going to die from HIV”
You live with HIV. “The 80s are behind us,” proclaims Raúl Martínez, 41, HIV peer technician at the community entity Apoyo Positivo and writer and author of the book HIVDA (Círculo rojo, 2023) who has shared his story with 20minutos. “A person with HIV on treatment with an undetectable viral load does not transmit the virus and their life expectancy and quality of life are practically the same as that of a person who does not have HIV.”
“HIV is a disease from which we are not going to die,” agrees Antonio Serrano, nurse in the emergency unit of the Virgen de la Arrixaca hospital (Murcia), president and founder of the HIVsibles Association of Murcia and member of the executive of Cesida contacted by this means. “People who were diagnosed 35 years ago are entering the third stage of life, and those of us who were diagnosed in our early 20s will reach that point.”
This has not necessarily managed to eliminate the fears, so linked to ignorance, that arise when receiving the diagnosis. “At first, the world fell on me,” says Raúl, who remembers that his doctor, in a now distant 2011, “didn’t have many skills to tell him the news.” “Over time, information and acceptance made me learn to live with HIV. Today, I am HIV-positive and I am active in ending the stigma.”
“They have supported me unconditionally”
Antonio experienced something similar. “I was diagnosed in 2015, when I was 26 years old,” he says, “and it caught me at a vital moment in which I believed I had a lot of knowledge. I had finished my degree six years ago and had worked specifically with patients with “HIV. All of that collapsed when I got the diagnosis.”
“It is the beginning of a grieving process. Even if you have that knowledge, fears exist,” he reflects.
Despite this, the first thing he did was communicate it to those close to him and his sexual partners. “They received the news well. It is still a general environment of people who are dedicated to the health field. My mother had been working in the clinic for people with HIV all her life, so it was a simple ‘you know, a pill for the rest of your life.'”
Raúl, on the other hand, explains that it took him a little longer to break the news. “There was a time when I didn’t tell it, since I didn’t fully accept it. But luckily, everyone I’ve told has supported me unconditionally.”
“There are people who have not had support”
In fact, Raúl is categorical in stating that he has never been discriminated against because of his condition. And Antonio expresses himself in a similar direction: “I have felt very supported by all my loved ones, my friends or my family. They have not discriminated against me.”
“It’s about giving back what society already gave me”
“The only thing I have been able to feel is in the healthcare environment, going as a patient. That the doctor opens a medical record and makes some out of place comment. But that is why at Cesida we have started the ReVIHsando program, to give all the information to health professionals regarding advances in HIV treatment,” he adds.
This is not, however, the reality faced by all HIV-positive people. “I am also aware that there are people who have not had that support,” Antonio cites as the reason that led him to start the HIVsible Association project. “It’s about giving back what society already gave to me.”
“There is still a lot to do regarding stigma, although it has decreased a little thanks to the collective movement and community centers,” says Raúl. “We continue to fight for it, and most campaigns focus on eliminating stigma to improve the quality of life of people living with HIV.”
“undetectable equals untransmittable
The advances that have been produced in recent years, the knowledge acquired and the treatments developed, have been decisive in ensuring the quality of life of people with HIV and a reality in which they can lead a normal life.
Precisely, Raúl shares that he was one of the participants in the studies that made possible the injectable antiretroviral treatment approved in December 2022. Antonio, similarly, says that he went through several medications that from the first moment assured him of undetectability.
But, despite the evolution in the management of the pathology over the years, Raúl believes that the information does not reach everyone. “Many people,” he argues, “are still unaware that a person with an undetectable viral load cannot transmit the virus. The famous I = I (undetectable equals untransmittable),” and he asks that this message be given strength.
“You can see the lack of information, which has been biased,” defends Antonio. “HIV does not understand sexual orientation or practices: any person who lives and is exposed can acquire HIV. For some time now it has been associated with the LGTBI community, with people who practice prostitution or with intravenous drug users, and is has forgotten that anyone can live with HIV.
“We have to talk openly about sexuality,” continues Antonio. “Talking freely about sexuality exposes us to talking about our fears and concerns.” “We also have to address the chronicity and aging of people with HIV.”
“Seek support and live”
Taking all this into account, Raúl and Antonio agree on the idea that they convey to all those, like them in their day, who are now faced with receiving a diagnosis. “Go to the numerous entities where there are people with HIV who can advise, support and help you accept your new condition,” advises Raúl.
“Look for support,” Antonio recommends. “Look in the community that we have generated during all these years for the support you need.”
“And, above all, live. The I=I made us powerful. Keep going,” he concludes.
And Raúl ends by addressing everyone. “Get tested and take care of your sexual health!”
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