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A quarter of a century has passed since the peak of the HIV / AIDS epidemic in the world. How has the everyday life of infected people changed during this time? Does confessing to be HIV positive still stigmatize? We talk to Irena Przepiórka, a certified HIV / AIDS consultant and president of the "Be with us" association, about living with an HIV-positive person at work, at home and in society.
The diagnosisHIVfor many of us still seems like a distant fiction. The fact is that the number of HIV cases has been decreasing for over a dozen years, and the World He alth Organization has announced that the epidemic is to be stopped by 2030. However, the virus is still dangerous and there are more and more infected people. One risky behavior is enough and the problem of HIV can affect ourselves, our loved ones, friends or partner.
We talk to Irena Przepiórka, a certified educator and HIV / AIDS consultant, about the effects of HIV diagnosis and everyday life with a HIV-positive person.
- In the 1980s and 1990s, HIV diagnosis was viewed as a sentence. People admitting their illness were discriminated against and treated as a potential source of infection. It made it difficult for them to find a permanent job, start a family, and make friends. How has the attitude of Polish society towards HIV positive people changed in recent years? Do they still face discrimination?
Irena Przepiórka:The situation of infected people has improved over the years, but HIV infection is still a reason for discrimination. There are still very strong stereotypes that cause this disease to have a very bad opinion. In the 1980s and 1990s, infected people aroused fear, which was also driven by moral judgment and lack of knowledge. Currently, we know more about the infection, information about infected public persons (eg Charlie Sheen) is common and the acceptance for HIV positive people is declaratively greater. However, people infected with HIV constantly face discrimination, and the fact of being infected affects their daily relationships with other people. In the 2015 survey of the quality of life of women with HIV, conducted by the "Stay with us" Association, it is clear that infected women most often report their infection only to their closest family members (mother and life partner). Trust in other people increases over timeinfection and decreases with age.
HIV test - what is it?
- Why is this happening?
I.P.:Fear and a lot of negative emotions dominate right after the diagnosis. The situation is aggravated by the fact that a newly diagnosed person often still has stereotypical thoughts and is worried about what others might say. HIV infection is not seen in medical terms, but "crimes and punishments": "X has HIV, meaning he must have done something wrong, so he is to blame for himself." A certain paradox follows and those infected initially self-stigmatize. After some time, when they have time to verify these beliefs themselves and learn to live with HIV, they tend to be more open.
However, life of an infected person is not easy. I know only a few people who openly talk about their infection, but they are people from the circle of social activists, carrying out a certain mission and thus ready to "come out of the closet". The average infected person does not inform colleagues from work or ordinary acquaintances. Thus, he often experiences indiscriminate jokes, for example: "take a sip, I don't have HIV". He experiences anxiety about his employment, giving another sick leave from an infectious diseases hospital. He experiences embarrassment and shame when he hears stereotypical, harmful opinions. She experiences sadness when a good friend who has had a baby turns around and suddenly stops inviting her home. He experiences anger and humiliation when the dentist claims that he is unable to perform a given procedure.
It is also worth noting that it is difficult to talk about a uniform situation of people living with HIV in Poland. It looks completely different in large cities than in the rest of the country. Infected people living in small towns have a much more difficult situation. The situation is also different for people who experience he alth problems due to infection. Often they are left with a disability or serious problems completely alone, without a livelihood and without a kind person to whom they can openly tell about their well-being, without hiding the fact of being infected.
- We learn that our partner, close family member or friend is infected with HIV … How to react in such a situation?
I.P .:The type of relationship we have with an infected person is decisive here. Only when our sexual partner finds out about the infection requires a special reaction. Then, in addition to caring for our partner, we must take care of ourselves and have an HIV test performed. The appropriate response to the information that a loved one is HIV-positive is to be supportive, full of understanding and compassion, but alsosignaling that the infection does not mean the end of the world. In the "Be with us" Association, we often have contact with people whose relatives have told them about their infection and do not know how to react. If someone knows nothing about HIV and feels anxious, it is worth looking for information, for example, on the AIDS Hotline or various non-governmental organizations. An infected person is particularly concerned about their relatives' understanding of their problem, so it is important to talk openly about their emotions, even if they are difficult. Being authentic and admitting ignorance or even fear is more acceptable for an infected person than artificial acceptance and subsequent avoidance of contact.
Therefore, if we feel fear and do not know how to react, I suggest that you say that it is also a difficult topic for us, and then expand your knowledge about HIV on your own. Acquiring reliable knowledge in this field reduces the level of anxiety - hard scientific data say clearly about the lack of even the slightest risk in everyday contacts from infected people. If someone learns how to get infected with the virus, he will not be afraid of company, working together, playing or even living with an infected person.
- And if we find out that we are infected with HIV - how to convey this information to our loved ones? Do we have an obligation to notify anyone about this?
I.P .:Legal obligation to inform about infection only applies to sexual partners. However, informing everyone else is an individual matter. Often, however, people who are diagnosed with HIV want to inform their surroundings about it. We always ask that such a decision be carefully considered and the informed person should be properly "prepared". What is it about? On the one hand, it is worth providing some information about HIV infection under the pretext of watching a movie or reading an article. On the other hand, it is worth examining this person's attitude towards HIV-positive people. It may turn out that she is not ready for such information yet and then it is better to refrain from it. It is often the case that information about HIV verifies acquaintance, friendship, and even a relationship. These are very difficult situations and each requires separate analysis.
- The news of your partner's illness is particularly painful and difficult to accept. How does HIV diagnosis affect a relationship in which one person is HIV positive? What changes do partners have to make to their daily lives?
I.P .:As with the previous questions, I must emphasize here that all issues related to HIV and relationships are not clear cut. The situation is different in a permanent relationship in which onethere was an infection from his partners. Often, in addition to the problem of infection, there is the problem of betrayal, endangering someone else's he alth or even transferring the infection to a loved one. The relationship is not always able to survive such a test. Another situation is when a seronegative person is associated with a seropositive person. Then the dilemma is when and how to tell about the infection.
Relationships that experience life with HIV are often more mature. It requires a lot of maturity to deal with the disease of a loved one and its consequences. And the consequences relate primarily to the very intimate sphere, but also affect the couple's relationship with family and friends. Sex is no longer fully spontaneous. It becomes imperative to use a condom, to use safer sexual techniques or to control the viral load. The couple often operate with a "secret". You cannot tell the mother-in-law why you go to the hospital again or to which one. Before the wife's friends come, you need to hide the drugs that usually stand on the bathroom shelf. Thousands of little things that affect everyday life. But the most difficult topic is parenting.
- What is the issue of having children between plus / minus (HIV-infected person and he althy person) and plus / plus couples? What is the risk of transmitting the disease to the child?
I.P .:Nowadays, medical advances have almost completely eliminated the risk of transmitting an infection to a child. If a woman is infected, she has procedures that will protect her baby during pregnancy, delivery and the perinatal period. Both couples in which both partners are infected and those in which one person is HIV positive may think about parenting. The methods of sperm centrifugation and female insemination are used. In couples where an infected person is effectively treated and has an undetectable viral load, the use of pre-exposure and post-exposure prophylaxis is increasingly used (treatment that begins before and immediately after exposure to the virus; it prevents infection or allows the complete eradication of HIV before it takes hold of the body) - editor's note).
- If we live under the same roof with someone suffering from HIV (relative, roommate), do we have reasons to fear infection?
I.P .:There is absolutely no reason to fear transmission. In everyday contacts, even of very close ones, such as mothers with children or between siblings, there is no slightest risk. Transmission of HIV infection requires very specific conditions and they cannot occur in everyday life.
- Where they canseek help for people affected by HIV, who are unable to cope with the environment, feel rejected by their family, friends, partner?
I.P .:Despite the outrageously low expenditure on prevention and support for people with HIV, there are many organizations offering various forms of help. Infected people can take advantage of meetings of support groups, self-help groups, consultations with specialists or educational activities. One of the examples of such activity are the meetings "Czas na Zdrowie" organized by the Association "Be with us" thanks to the funds awarded in the Positively Open competition. During the meetings, infected people from all over Poland can obtain reliable and complete knowledge useful for HIV + people.
There are many such programs in Poland, but again I must emphasize that the situation in our country is very diverse and contact with organizations is sometimes difficult. However, there is always access to counseling over the phone (e.g. AIDS Trust) or searching for information on websites offering reliable news, e.g. www.leczhiv.pl.
- How should HIV-positive people respond to discrimination in the workplace? Are there any sanctions for employers who fire people who have been diagnosed with HIV?
I.P .:It is difficult to say how infected people should react to discrimination in the workplace. These are isolated cases as most HIV + people do not disclose their infection. An adequate response is to seek legal measures, because under the law HIV cannot be the basis of unequal treatment in the workplace. However, such a strategy entails the dissemination of information about the fact of infection. In most cases, HIV-positive people give up the fight and, not wanting to expose themselves to unpleasantness, do not seek to respect their rights. And employers go unpunished.
- 2011 Report “People Living with HIV. Stigma Index ”reported cases in which HIV-positive people were discriminated against in medical facilities. For example, one gynecologist did not want to carry out the pregnancy of an HIV-infected woman. Can the doctor be liable to do so?
I.P .:By law, a doctor cannot refuse to perform a medical procedure because of an infection. And it usually doesn't. Finds other "reasons". On the AIDS Helpline, we recently had a case where an infected person reported to us that a well-known private medical service network refused to undergo a minor surgery when she said she was infected.We made a "provocation" by calling this facility and simulating the same situation. We were also faced with a refusal. Then we asked for a legal basis. Within a few minutes, a very nice lady called back with the information that there were no contraindications for the procedure and she apologized for the confusion. There are hardly any cases of overt refusal. This is happening quietly, under the pretext of the lack of appropriate apparatus or equipment.
According to an expertIrena PrzepiórkaMA in political science, graduate of the University of Warsaw. Trainer, certified educator and HIV / AIDS consultant. Currently employed at the Oncology Center-Institute in Warsaw. For over 12 years, she has been involved in activities for people infected with HIV in the Association of Volunteers Against AIDS "Be with us". Author and implementer of many educational, preventive and support projects. Currently president of the "Be with us" Association.
Worth knowingOn May 6, the educational campaign "A tram called desire" starts in Warsaw. The campaign aims to raise awareness about HIV among young people who are most likely to engage in risky sexual behavior. Trams called lust, with HIV educators inside, will run for several hours on selected weekend evenings on routes that include the most popular nightclubs. Apart from Warsaw, trams will run along the following streets: Kraków, Wrocław, Białystok, Bydgoszcz, Katowice, Szczecin, Poznań, Gdańsk.
The organizer of the action is the International Association of Medical Students IFMSA-Poland. The campaign is financed from a grant awarded to the Association in the Positively Open competition.
More information about the action and its schedule can be found on the fan page of the "Tram Called Desire" campaign on Facebook.