“Some of my patients would refuse to take brochures on HIV: they were afraid someone would see them, and learn their status. That’s how strong stigma and self-stigma is in our country,” says Elmira Dzhorbaeva. After having worked as an HIV-specialized doctor for several years in Tokmok, Elmira decided to fund a non-governmental organization in order to provide more support for people with HIV. “I realized we didn’t have a community where patients could openly share their problems, concerns, or distress. But there are a lot of negative feelings attached to the diagnosis and it’s important to have somewhere to turn to for help.”

The name of NGO where Elmira is the head, “Ishenim Nuru”, translates from Kyrgyz as “the light of faith”. It receives funding from the UNDP (Global Fund Project) to help people in Kyrgyzstan face their HIV diagnosis. “We try to show patients that there is always light at the end of the tunnel,” Elmira says. The NGO provides social and psychological support to people with HIV. Staff members organize peer-to-peer consultations, medical appointments, trainings, at-home visits, legal aid, and ensure that their clients are able to take their treatment in the best conditions. 

Janyl works as an HIV clinical consultant for «Ishenim Nuru». She provides consultations to more than 30 people per month and organizes one monthly group session on a specific theme chosen by the participants. “People don’t always understand what doctors tell them. They need more time, simpler explanations. I try to make sure they have all the information they need to take treatment and go on with their family life.”

Recently, Janyl helped a couple that was about to divorce. They both wanted a child, but since the woman had HIV, her husband thought she could not conceive. Janyl explained that with adequate treatment, she could in fact give birth to a perfectly healthy child. Now, the couple is preparing for pregnancy.

The best support comes from peers

Ishenim Nuru counts several peer consultants among its staff. These are people living with HIV, who want to help others in the same situation. “Our peer consultants have been living with this disease for years, and they’ve felt all the emotions that HIV diagnosis can evoke. It’s always a shock and a person needs time to accept the diagnosis,” says Elmira. “I haven’t been in their shoes, so why should they listen to me? No one can bring better support than peer consultants.”

Dimitri, Sveta and Marat, who work for Ishenim Nuru, have been able to gain the trust of their clients. They set themselves as examples to others, to show that yes, life with HIV is possible and still beautiful. They are the ones giving recently diagnosed people the will to get treated and live. 

 “It’s good to have an example. People diagnosed with HIV understand that they’re not alone. And I can show them that with treatment for HIV, their life quality will improve,” says Dimitri. He gives hope to people who are ready to give up on life; makes sure they follow their treatment well; and even organizes treatment for those who left to work abroad. “I personally was very depressed when I heard my diagnosis. But there were people around me in the same situation, and they helped me accept it and take treatment.”

“The most important step is to accept the diagnosis,” says Marat. “Then, you can not only exist, but live life at its fullest.” Marat knows what he’s talking about, since he refused to believe he had HIV for almost eight years, before he got really sick. He used to be a high-ranked professional football player, but had to stop at the age of 30 when he was injured. That’s when he started using drugs, and he fell sick shortly after. “I’ve been on treatment for ten years, and I’m doing just fine. Now I help others cope with this. When I tell them that I’ve been living with HIV for 20 years, they open up and I see hope in their eyes.”

Convincing people that life is worth the battle

“My goal is to help people understand that life is beautiful, that you have to continue living and accept your status,” says Sveta. She never refuses to help, even if a client calls her in the middle of the night. “It’s very difficult, I meet people with terrible stories and I’m sensitive, I can’t always hold back my tears. But other times, it’s so rewarding: for example, one girl came to me devastated, and now she is married, she’s working, and she’s trying to get pregnant.”

Sveta, who’s 37 but looks much younger, is always full of energy and smiles from ear to ear. She’s had to work a lot on herself though to find this happiness and positivity in her. Sveta started using drugs when she was a teenager, after her boyfriend was killed. It was the only way she found to cope with the pain. When her husband died of an overdose, Sveta decided to stop drugs. She left Kyrgyzstan to be far from those who pushed her to use drugs and, for four years, had to earn bread as a sex worker. Later, she met a man who brought her to another country, took away her passport, locked her in his apartment day and night for years and beat her. Now Sveta is finally free and back on her feet, and she’s enjoying every dawn and every dusk she has.

Sveta regrets that there is so much stigma against people living with HIV in Kyrgyzstan. “Doctors stigmatize us as well. Recently, the emergency service refused to treat one of my clients who needed urgent medical help, because she had HIV.” There’s even stigma within the HIV-affected community, says Sveta. She remembers having seen one woman with HIV judging another young girl with a baby in her arms, saying that she probably cheated on her husband. “I got really angry: maybe the girl got HIV at the dentist, and anyway, it wasn’t her business. We’re here to support each other, not bring each other down.”