I feel we have two lives: in one we are healthy people, and in another we are sick with HIV
In early July, one of the sanatoriums of the Republic of Mari El hosted the seventh meeting, "It's simple!”, for children and adolescents living with HIV. The event was attended by 54 children and more than 40 adults. Parents and specialists from different parts of Russia and Kazakhstan gathered to teach teenagers how to live with a HIV diagnosis and cope with the associated stigma. The meeting wasis organised by the Svetlana Izambayeva Foundation.
Life4me+ participated in this event for the second year running. Read our article, below, about the meeting for children living with HIV and what non-children's problems it raised.
Children tempered by stigma
Children and adolescents often react to a HIV diagnosis calmly, young people tend to favour tolerance and respect individuality. For the most part, problems associated with stigma are created by adults - they fear HIV las they would fire, they still remember these posters from the 90s, which proclaimed that: "AIDS is death!”. Now, children suffer because of this.
After everything that was said, heard and seen at the rally, I want to appeal to everyone:
"Let's make it easier. Children should not suffer. They are not responsible for their parents and for problems in society. Stop kindling stigma. Enough oblique glances, whispers behind our backs and baseless accusations to our faces”
When children are told that they have HIV, they don't feel anything in that moment. HIV is a blank slate for them. There is no stigma, no self-stigma, no fear. All this is layered on later. These "layers" need to be stopped. There are four main things you need to know about HIV:
- HIV is not transmitted via normal household and daily activities. There are three methods of transmission: sexual, through blood, and from mother to child during pregnancy or childbirth.
- A person with HIV should always take their treatment as directed by their HIV clinic. This stops the replication of the virus.
- U=U: people with an undetectable HIV viral load cannot transmit the virus to their sexual partners.
- People with HIV, who are taking treatment, can have healthy children free of HIV.
These facts have already been repeatedly proven by scientific research that is available in the public domain. If everyone tries to learn at least a little more about HIV, about the scientific progress that has taken place in the last thirty years, there will be less stigma. People have to be kinder. There are no diseases in the world that should allow people to be treated inhumanely.
Uncrying tears
When you look at the artwork that was created during the meeting, it becomes clear WHAT these children have had to face.
There is so much PAIN in the children's art… So many unspoken words…
- I can't say that I have HIV - I can't.
- I can't talk to anyone about it - it won’t be accepted.
- I can't share my feelings - I'm afraid they'll be rejected.
- I can't fight the system - I'll lose.
- I can't be happy - I'm not worthy.
Serious psychological work with children takes place at the meeting. Many people take time to just be able to start talking about their feelings, resentments and fears.
There were a lot of tears. They were every day. And not only children, but adults cried too. In the first days, these were tears of anger, resentment, self-pity. Then it was tears of liberation and hope. And on the last day - tears of sadness. We didn't want to leave.
This is all for you
For the children, the meeting is an incredible event. Here, in a comfortable and safe environment, they can learn a lot of new and important things about the virus, therapy and their wider health. They can calmly talk about HIV without being ashamed. Psychologists, consultants, doctors and invited specialists work at the meeting - they know how to properly impart important information and help children work out their concerns and fears.
Naturally, these events aren’t just work. There are new friends to make, swimming in the lake, quests, team games, yoga, discos and other fun. However, this year the team had very little free time, the programme was jam packed. The organisers had to keep within the five day limit - for financial reasons. Right up until the last moment, everyone was afraid that the meeting might not take place. But thankfully the money was collected just in time.
Some children admitted, as they left the event, that it was "the best week of their lives". It touches us to hear this, but it scares us that this week might not have happened at all.
Treatment is boring, but there’s no way forward without it
HIV treatment is the most important topic at the meeting. An infectious diseases doctor, tells children in a detailed, yet playful way, about HIV - how it acts and how medicines affect this process.
The main task is to convey to the children the importance of treatment, teach them to independently take their treatment, and treat it responsibly.
“You can't help but take your pills, your life depends on them - but it’s hard for a child to fully accept this idea.”
Children who were born with HIV have been taking treatment since childhood. Medicines are part of their lives. Treatment fatigue is a common phenomenon. Pills "don't climb into your throat", syrup that “you want to spit out", adults make you feel guilty when you flushed your pills down the toilet because you don't want to take them anymore. Professional psychologists, consultants and doctors work with these problems at the meeting.
Several children resumed taking medication at the meeting - and these are lives saved by the meeting.
"For our own good, we take these pills," said one of the participants.
In memory of Diana
HIV is not a deadly disease... if treated.
Diana is a girl who has had HIV since birth. She came to the meeting several times, first as a participant, then as an assistant. She was a young activist who helped teenagers living with HIV. Diana was bright, interesting, cheerful and active. She someone you could look up to. But sadly, she is no longer with us.
Diana died, at the age of 18, from opportunistic infections after she stopped taking her treatment. She fell in love, moved in with her boyfriend and stopped taking her pills because she was afraid she would rejected if her boyfriend discovered her status. Fear was so strong that common sense could not overcome it. Diana was killed by STIGMA.
When serious health problems arose, the guy, of course, found out about her HIV status anyway. “What do you think happened? Did he turn away from her?” Svetlana Izambayeva asked the children who listened to Diana’s story, mouthes open.
Everyone was silent. No one could even imagine that the guy was with Diana to the end, feeling sorry that she hadn't told him earlier about her diagnosis. Unfortunately, the doctors couldn't save her.
Diana was dedicated to making the meeting last year happen. So, everyone was concerned about her death. It was hard to believe. Diana knew EVERYTHING about HIV, about treatment and what happens when you stop. But she didn't choose herself and her health, she followed the stigma. She didn't even ask for help - her FEAR and self-stigma was so strong.
The most emotional moment at the meeting
The most vivid and memorable for many participants was the exercise 'People with HIV and People without HIV'. During one of the classes, as they talked about stigma, Svetlana Izambayeva asked those who are not living with HIV to stand up and take to the stage.
This surprised many people, as it turned out that many people living without HIV came to the rally. Nobody had even thought about it. It didn't matter whether a person had HIV or not, exactly until it was asked.
It was unpleasant to “stand on different sides of the barricades". It was a feeling of separation that was unpleasant. It shouldn't be. They were with us, here, just five minutes ago.
“Do you want to do something?” Svetlana Izambayeva asked the audience. What do you think needs to be done to get rid of that unpleasant feeling?
It was a touching moment - when children and adults living with HIV began to approach those without HIV and hug them. No one was ashamed of their tears at that moment.
In fact, there is no reason for division between people with and without HIV. We live in the same society, we should have equal rights and opportunities. You just need to act, not hide. It felt like a revelation to many.
"I realised that everyone, absolutely everyone, is the same," said one of the participants.
A bright future for everyone
Adolescents living with HIV have the same prospects as all other children. And this needs to be communicated to them. The most important idea, that surprised many, is that a person living with HIV can safely build a relationship with an HIV-negative partner. And there are plenty of positive examples of such relationships.
Adults living with HIV came to the meeting to share their experiences, both professionally and in their personal lives. Many of them are in serodifferent couples and have children who are free of HIV. They have interesting jobs, and they live openly with HIV.
"Living examples" give hope. Children leave the event inspired and determined. Some teenagers begin to blog on social networks, many go into activism and social work, some decide to share their status and live openly, some acquire a new self-confidence. These events give children a positive boost, a lot of new friends, plus, they even get cool photos from professional photographers.
It is also important to note that independent support groups continue to work after the meeting, offering continued support in their region.
Thank you, thank you, thank you
We would like to thank Svetlana Izambayeva, her team of professionals, and Ekaterina Stepanova for organising and hosting this event.
Thank you to all the psychologists, doctors, counsellors, consultants, activists, parents, photographers and journalists who have made every effort to ensure that this meeting takes place.
Further thanks go to actor Askar Ilyasov ("Patent Zero"), who came to the event and gave a lot of positive motivation to children and adults, as well as drawing attention to the problems facing teenagers living with HIV.
Special thanks to everyone else and the other organisations who took part in the fundraising.
P.S. In the near future, a series of interviews with teenagers living with HIV will begin in the "Collage" section. We were interested to know how children look at the problem of HIV stigma, what they think, feel and what plans they make for life. Don't miss it!
