2023-12-01 09:54:19
On the occasion of World day against AIDS, December 1, Dominique and Oliver tell EFEsalud their respective stories separated by more than 30 years in time, with their differences and similarities with the same diagnosis, that of HIV. Two examples of how the advancement of medicine and science They have allowed life to make its way even though society is not always up to par, since, as both confirm, the stigma still exists.
Dominique’s story
Dominique Cubells is from Barcelona. She is an only child. In the 1980s she was hooked on drugs. At the age of 22, during a hospital stay, she was given several tests, including HIV tests. “They didn’t ask my permission, nor did they tell me that they were going to do it,” says the woman.
The diagnosis was positive, he had HIV. The day they told him he was going with a friend, he did not expect that outcome at all. He had not heard much about the virus or AIDS either. It was the 80s. Her friends were drug addicts like her.
Dominique when he was young
“In the same hospital where I was there was a boy isolated in the room, I remember that when they opened the door where he was, they had the IV bag covered with aluminum foil. The nurse told those of us who were admitted not to go in there, that there was something very wrong with the boy and that if he came out, we shouldn’t hang out with him either,” Dominique remembers. That patient had HIV.
He regrets that during those years The messages that came about the virus were that it was contracted by “whores, junkies and faggots”, “dirty street people”..
He was lucky to have some parents who supported her a lot not only at the time of the HIV diagnosis but always, but friends of hers did not have the same fortune and at home they put on gloves, they were isolated in another room, they ate separately from the rest of the family…
Knowing that he had HIV did not make Dominique change his life, he continued taking drugs. She thought she was going to die from one thing or the other.
Marginalization and rejection
At that time, the antiretrovirals of today did not exist, but zidovudine (AZT), the first antiretroviral drug used for HIV and AIDS. It had many side effects, Dominique points out, that’s why there were people who didn’t want to take it.
She did start the treatment, she even took more than 20 pills a day, but not for long, he stopped because of the adverse effects. He suffered from chronic anemia and bronchitis, he went through about seven pneumonias, due to his poor defenses as a result of the virus.
He felt marginalization and rejection closely. Her father told the owner of the bar below her house, that she was a friend of hers and did it to vent, that her daughter had HIV. She must have told people about it, because Dominique noticed that they didn’t look at her the same way, and besides, she couldn’t get any work either.
“I had a partner for many years, who was from the neighborhood, and they told him right away,” he points out.
And she relates that in the first jobs she tried to get as a caregiver, they hired her at the moment but two or three hours later, they called her to tell her that in the end she was not the one chosen.
“Of course, it was because a neighbor or something immediately told him. People discriminated against me, of course, the thing is that no one told me to my face,” Dominique laments.
Her father died and she sank further. One day while crossing the street, she was caught by a bus that ran one of its wheels over one of her arms. She almost lost him and she told herself that if she pulled through, she would quit drugs. So it was.
A new life
In the 1990s, history changed again. It began to be marketed Highly Active Antiretroviral Treatment (HAART).
Giving up the drug and the new medication made his health condition “normalize,” his viral load became undetectable. So he continues, taking medication and with the virus, asleep.
However, he emphasizes that his body is punished. “We are survivors,” she says. He speaks in plural because he is part of the group of HIV-positive women of the State Coordinator of HIV and AIDS (Cesida)where it also belongs to “Teatreras” theater group.
“We live in a patriarchal system and that shows in everything, because we have experienced it even in the clinical trials, which were done with men and we have been overmedicated because our bodies are not equal,” says the woman.
Being in women’s groups empowers them, they share truthful information so that “there is less stigma,” but there is. He assures that although people with HIV cannot be fired, it continues to happen. And there are still people who have had the virus detected but have not told their family or those around them “for fear of rejection.”
And he affirms that there are still people who still believe that the virus is transmitted by drinking from the same glass or by being bitten by a mosquito.
Dominique also raises her voice to insist that people with the virus age ten years earlier and people of a certain age already find it difficult to work because they are knackered.
It does recognize that although a diagnosis is always an HIV diagnosis, receiving it now is not the same as receiving it more than 30 years ago.
“Before it was synonymous with death, now, not,” he emphasizes.
Oliver’s story
It is the case of Oliver Marcosa 30-year-old young man, who lives in Salamanca and He is general secretary of Cesida. His story, although she shares an HIV diagnosis with Dominique, is different. Having the virus is no longer linked to death.
Oliver Marcos. Photo provided by Cesida.
Oliver was admitted to the hospital five years ago for a health problem and one of the tests they considered doing was for HIV because he barely had any defenses and they didn’t know what it could be due to. They did it and it was positive.
“When I was diagnosed with HIV, on the one hand, at that moment I felt relief, because in the end I already knew what was happening to me, but on the other hand, it was a pretty strong impact, especially because I didn’t expect it. I considered that I had not assumed risky practices. Indeed, what I had was an erroneous perception of what risk is, that is, there are practices that have less risk, but still have it,” says Oliver.
He acknowledges that it was accepting “many things at once,” such as “a jug of cold water” because until then he had not lived his sexuality openly. In any case, she has always had the support of his family, which for Oliver has meant “a lot of peace of mind.”
Your personal process
“I lived a personal process in which I had to face that fear, that what is going to happen, fearing if someone was not going to want to be with me. In short, all those things that I suppose that any person experiences when they receive the diagnosis of HIV and that they consider in one way or another,” the young man emphasizes.
He also did not have much information about the virus because he points out that today, with the therapeutic advances that make the viral load undetectable, they have partly meant that “instead of informing ourselves, we avoid the issue.”
In his case, when he learned of the HIV diagnosis the virus was already in the AIDS phase by having the cells of the immune system, CD4 lymphocytes, well below 200, which is when the infection is considered to have entered that stage. He was only 49.
PHOTO EFE/Gustavo Amador
“The doctors told me that if I contracted any type of infection of any kind, there was a possibility that I would not leave the hospital because my immune system, my body, did not have the capacity to defend itself,” he emphasizes.
He began treatment and his defenses began to rise, so he was able to leave the hospital and start living a “relatively normal” life. Thus, her situation improved to such an extent that her viral load was and is undetectable.
“This means,” Oliver says, “that the virus is not affecting my body, as it could if I were not on the medication and that I also cannot transmit the infection to anyone, not even sexually,” he highlights.
There is still ignorance
Since he did not know anyone with HIV, what he did was search the internet for testimonies of other people with the virus. He also went to the local Cesida association in Salamanca, where he met more people in his situation.
He assures that today there is still a lot of misinformation and ignorance about HIV, sexual health, and sexually transmitted infections.
And the stigma continues: “There has always been a relationship between HIV and the LGTBI community, even though it has nothing to do with who you like or who you sleep with, but rather it has to do with what type of practices you have,” Oliver insists. .
In his working life he has never suffered discrimination but he knows that there are people who lose their jobs when their superiors find out about their situation.
The stigma
For this reason, he demands that anyone can talk about having HIV without feeling any shame, although he insists that visibility is not mandatory, each person decides what they want to tell about their life and what they don’t “and everything is respectable.” But if they decide not to do it, it should not be because of shame or fear of social rejection.
“But because, perhaps, he considers that it is an intimate part of the person that should not be shared and that seems to me to be very important because today talking about having HIV is still a coming out of the closet, something that It does not occur with other medical pathologies. We have a very important pending task there,” reflects the general secretary of Cesida.
PHOTO EFE/Javier Lizón
and there is barriers at a social, legal, administrative levelamong others, there are many young people, when, for example, getting life insurance or applying for a mortgage to buy a house, or when undergoing an intervention because “they are left last on the waiting list.”
“On many occasions all these barriers, this stigma, this having to hear ‘Oh, but I don’t want to be with you’, ‘oh, but you have this because who knows what you’ve done’ continues to trigger a lot of anxiety and a lot of alertness.” constant, which makes it very difficult for us to enjoy full mental health,” says the Secretary General of Cesida.
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