How to help teenagers living with HIV?

Finding out about an HIV diagnosis is very difficult. Finding out that you are HIV-infected as a teenager is doubly difficult. How to help teenagers cope, explains epidemiologist Anna Zagainova.

The article was created specifically for the joint project PSYCHOLOGIES and the UNESCO Office in Moscow “Territory of TEENS: a guide for parents of adolescents.”

About the Developer

Anna Zagainova is a doctor, consultant, head of the technical support group of the Russian Red Cross HIV Resource Center.

Among adolescents living with HIV today, some have acquired the virus through a dirty syringe or through sexual contact. The rest are grown-up children who “inherited” it from their parents. In a few years, thousands of HIV-positive children who were born in the early 2000s will become teenagers. If they learn about the diagnosis at this difficult age, the support of loved ones is especially important for them. Experiences associated with awareness of the cause and nature of one’s disease are, as a rule, more pronounced against the background of the crisis of adolescence. Teenagers’ reactions to the very fact of illness can be violent and even tragic, reaching the point of suicide attempts.

Experts have long noticed that the state of health of HIV-positive children and adolescents is closely related to living conditions and the nature of relationships in the family, with the behavior of parents. Indifference to the problems of the child or increased irritability of parents can significantly worsen the state of his health and life prognosis. At the same time, he does not need to be surrounded by such intense care that it becomes a burden to him, so that he constantly feels sick and in need of help. The main thing is for a teenager to know that he has a home, a family and loving parents who, no matter what happens, will always understand and help.

Tell the teenager the diagnosis

A child who is told about his or her HIV status at the age of 6–11 years usually adapts to it by the age of 14–15. The later a teenager finds out about this, the more difficult it is for him: he may become aggressive or develop apathy: “When I found out that I had HIV, I was very angry and worried because I felt bad. During the week, I didn’t want to go to school, go for a walk, or do anything at all, but just lay on the couch and watch TV.”* Upon learning that he has been ill for a long time, the child feels deceived. Resentment towards parents for being infected (if HIV infection is congenital) or for hiding it from him for many years can lead to refusal to communicate, isolation, and even leaving home. “I’m very angry with my parents because they didn’t tell me about this sooner,” says Andrei, 14. “If they had told me when I was younger, I would have had more time to get used to HIV. And now I’m an adult and I feel lonely and scared.”

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Some teens find out they have HIV when they get tested before hospitalization, when they are pregnant, or when they want to be tested after having unprotected sex. A positive test result usually causes shock. I don’t want to believe this. From the realization of irreparable – hopelessness and despair. “The doctor told me directly,” recalls 16-year-old Tatyana. – There was a stupor, I looked at one point out the window, not thinking anything … She dripped valerian on me, and then I started to get hysterical … Then she let me out, I had to cross the street, take a minibus, I did not understand what I needed, so I went home on foot … I walked and thought, how could I not give myself away, on the machine. I ran out of money on the phone, the doctor didn’t think to ask if there was anyone at home to call … It’s necessary that someone in such places where diagnoses are reported, take care of you, pass you from hand to hand, sit with you for the first a few hours … the most difficult thing is, of course, later, when you realize … I am standing at the door, my mother asks: “What is the matter with you, daughter?” I can’t pronounce the words, I lost the gift of speech, then I said. Mom is also in shock, took my hand, and we again went to the same doctor … I did not understand anything all week … “

It would seem that in such a difficult moment, help should come primarily from parents and close people. But often at the time of diagnosis, adolescents perceive their parents as another threat. They are afraid that their reaction to the message about HIV will be aggressive: “I would be kicked out of the house if they found out.” They are afraid of their accusations and at the same time worry about their parents, worry about their health, do not want to upset them: “Mother did not want to worry, after all, she is not twenty years old – heart, pressure.” The most unwise and dangerous step of parents in such a situation is to start blaming the child for what happened and distance themselves from him. “I really wanted to tell my father that I have such a problem,” admits Maxim, 19. – Since childhood, I had very serious problems with my parents – I am a difficult-to-educate child. My mother died, and my father has other sons from another woman. When I told him, he grabbed his head: “Here’s a spoon for you separately, here’s a fork for you, here’s a towel for you, soap, separately – a plate. Do not approach children, do not shake hands. This was the only clue to get closer, and then I was rejected. I went crazy.”

The task of parents is to support the child

Of course, parents may not know anything about HIV or what to do next. They themselves were most likely shocked. But they need to support the child, so it is impossible, succumbing to panic and anger, to say that he himself is to blame for this. “I knew (a) that this would end” is not the best phrase to start a conversation. Pull yourself together and calm the teenager. Say that you still love him and never leave him in trouble, that you will think together what to do and how to live on. If you can’t find the words, just hug your son or daughter. The main thing is to show that you are there and ready to help.

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The child will take time to realize what has happened and accept it. Your active support will help him quickly cope with his experiences and gain new perspectives on life. Don’t let discouragement and depression get the better of you and your child. With all your might, support him with a positive attitude to live a familiar life, communicate, study, plan for the future and bring your plans to life. To do this, you may need the help of a psychologist, who can usually be found at the AIDS Center. Many cities have support and self-help groups for people living with HIV. The main thing is to overcome embarrassment and not be afraid to ask for help, because coping with all the experiences and problems alone is often too difficult, and unproductive.

Start treatment, understanding its importance

The need to constantly take antiretroviral drugs, periodically visit the AIDS Center, and take tests can be extremely depressing for a teenager. He begins to be embarrassed by peers, teachers, afraid of their questions, worried that everyone will find out about his illness and begin to despise him. These experiences can be so strong that the teenager decides to stop treatment without permission, which should not be allowed. Parents need to anticipate such a situation and discuss in advance with the teenager how he can explain to others the regular intake of pills. He will more carefully follow the doctor’s prescriptions if he understands the purpose of the treatment and good contact is established between him, the doctor and parents, if he trusts the doctor and parents, if the treatment regimen is simple and there are few side effects. In any case, the adolescent must clearly understand that his health and life expectancy depend on how firmly he adheres to the treatment regimen. “I have been taking ARVs for 3 years now,” says 14-year-old Yana. — Of course, it affects my active lifestyle. But I try not to lose heart and think only about the benefits these pills bring to my body. Also, taking ARVs should be kept secret. When I drink pills in front of friends or strangers, I say that they are vitamins so that they do not ask unnecessary questions and do not accidentally find out about my status. Or sometimes I invent a different diagnosis for myself.

Keep a secret, but be ready to defend your rights

In the minds of most people, HIV is not just a disease, but something shameful and terrible. Out of fear of being rejected or ridiculed, of losing friends, of being forced to leave school or work, most people living with HIV, including children and adolescents, hide their disease from others. They are afraid (and not without reason) that those around them, having learned about the diagnosis, will refuse to communicate: they will “shy away”, “keep as far as possible”, “bypass” them.

Often, the HIV status of a teenager is hidden even in the family. Most often, fathers and other relatives are not initiated into the situation. Sometimes adolescents themselves do not want to disclose their diagnosis, fearing the reaction of their parents, but often the initiator of this is one parent, usually the mother. The burden of “keeping a secret” and the fear of revealing HIV status causes severe stress and depression in adolescents. It is important to understand that sooner or later, either accidentally or intentionally, HIV status may be disclosed. You have to be ready for this. First, you need to know your rights and be ready to defend them. The law does not discriminate against people living with HIV and guarantees them equal rights with other citizens to receive medical care (including free HIV treatment), education, work and leisure. Secondly, it is necessary to think over the tactics of behavior in case the child’s diagnosis is found out at school, neighbors or relatives. It is very important to deal with internal stigma – feelings of guilt and inferiority. Then it will be easier to resist the external stigma – rejection and condemnation.

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A teenager living with HIV can be admitted to any educational institution on a general basis. In connection with HIV, there are only some restrictions on certain professions and activities, for example, it is impossible to serve in the army and receive some military specialties. The presence of HIV infection in a teenager cannot serve as a basis for refusing to admit him to an institution of secondary or higher professional education, as well as exclusion from it. However, many schoolchildren, students and their parents rightly fear prejudice from classmates, fellow students and teachers if a student’s HIV infection becomes known at school or university.

If you learned about the disease at school, you should immediately talk to the teacher, head teacher or director so that they explain the situation to other students, their parents, teachers and prevent bullying of the child. If the school administration needs help with this work, they can contact the child’s primary care physician at the AIDS Center.

Life prospects for a child with HIV

HIV infection does not deprive a person of life prospects. Strictly observing all the prescriptions of doctors, receiving proper nutrition, psychological support from loved ones, HIV-positive adolescents, like all other young people, can live, study, make friends, communicate, and in the future – work, have a family and healthy children . The achievements of modern medicine allow us to expect that HIV-positive people will be able to have a fairly significant life expectancy, quite comparable to the average life expectancy of people not infected with HIV. “Actually, I’m completely ordinary,” Yana continues to say. – Like all my peers, I go to school, go in for sports, and I also love to draw, I love animals, I love to swim in the sea and play football with friends, I love my mother very much …. But I’m also different from most kids my age. And although outwardly I don’t see it at all, there is a virus in my body that I have been living with since birth. In general, I want to say that living with HIV is not so scary. There are diseases much more dangerous for humans. Of course, when you have a foreign virus in your blood, difficulties often arise, but all of them can be overcome!”

How does the virus affect sex life?

As a teenager grows older, issues related to his sexuality and the opportunity to start a family and have children become more important for him. And those with HIV are no exception. The task of parents is in time, even before this happens, to talk with the child about sexual relations. It is not simple! Sometimes teenagers themselves meet with hostility such attempts from their parents. But more often than not, parents themselves feel awkward. In this case, consult with specialists at the AIDS Center, take booklets there, read them yourself and offer them to your child.

When talking with a child, develop all his fears and concerns about the inability to love and be loved, live a fulfilling sex life, start a family and have children. People living with HIV have all the same sexual and reproductive rights as other citizens! It is important to convey to a teenager the idea that his health and future largely depend on his responsible attitude to himself and to the one he (or she) loves.

Sexual relations bring pleasure, but can also have unpleasant consequences. With unprotected sexual intercourse, re-infection with HIV is possible, but with other strains, which can lead to the rapid progression of HIV infection and the development of drug resistance of the virus. In addition, with unprotected contacts, the likelihood of transmitting the virus to a partner is high. And this is a crime! Until the child reaches the age of 16, parents bear full responsibility for him (including criminal) for deliberately infecting other people. It is the responsibility of the adolescent to tell his partner that he has HIV and to use a condom every time he has sex. The task of parents is to make sure that the child is motivated to behave responsibly and knows how to behave correctly so as not to become a source of infection for others.

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My history

“When I was little, at the age of six or seven, I didn’t know about such a disease at all. And at eight, when I was in another family, not the one where I now live, they told me to be more careful and that I had HIV. What for? Well… to be careful. At first I did not understand anything, I did not know what it was. And then they told me more, and it became so … scary. It was scary that I could pass the disease on to another person. I think it’s right that they told me. Then I got used to it and stopped thinking about it. I mean, it’s not scary anymore. Moreover, I take medication. Twice a day. Sometimes I forgot, but this is rare, for half an hour, no more. Quit … In general, it used to be boring. But you can’t quit, because this is life. It’s convenient to drink pills at home. But in some places, for example, in the camp, it is somehow scary there. I don’t want anyone to ask, ask. You have to cheat all the time. Some of my friends saw it, they asked what it was. I said: “So, the doctor prescribed …”

So, in general, there are no problems, but it depends where. I was in one camp, they didn’t allow me to compete there. They said: “Go, sit down, you will only watch.” All the counselors knew, the nurse told them. There, when you arrive at the camp, there is a medical examination. And there was a mark on my card. I don’t know who else knew about my diagnosis…

Good thing the kids didn’t know. I think they would be afraid and not approach. The topic of the lessons is “HIV/AIDS”, and I know it even better than the teacher. But somehow I don’t feel like talking, because… it’s clear. In general, while no one knows about my status, except for my family. Friends don’t know. But I think that classmates who have been friends with me for many years, who support me, they may not be very afraid. They will understand me.”

* Here and below are statements from adolescents and young people living with HIV from Russia, Ukraine, and Kazakhstan. Source: “Medical and psychological problems and social adaptation of HIV-positive adolescents” (UNICEF, 2010); unicef.ru/upload/iblock/ca0/ca0c982b0bdc4029fb8b9e966d7c6c28.pdf

The article was created specifically for the joint project PSYCHOLOGIES and the UNESCO Office in Moscow “Territory of TEENS: a guide for parents of adolescents.”

The information and materials contained in this publication do not necessarily reflect the views of UNESCO. The authors are responsible for the information provided.

1 Comment

  1. Ngine HIV uma nginomuntu wam ngk ngizizwe sengathi imizwa yami ayisebenzi ingabe kwenziwa yini lokho?

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