“I remember when I was little, there was one very stigmatising ad on Macedonian TV about how to protect yourself from HIV,” recalls philosophy student Bojan.
“It was really scary. It was like: ‘Do you know that in every discotheque you go to, there is at least one HIV positive person? In every school, in every university .... HIV means a really short life, [HIV is] a monster.’
“This was also my first picture of HIV. I was about 11 years old.”
Today, Bojan is a tall, confident 23-year-old. Two years ago, he was diagnosed with HIV. After his partner told him that he had tested positive, Bojan spent a month preparing himself to get tested. “I was 99.9 percent sure that I was already [HIV positive], so I had a little time to prepare myself for what to expect, I had time to cope.”
Bojan went to the Clinic for Infectious Diseases, Macedonia’s main centre for HIV testing and services, where he was diagnosed and met Rumena Gjerdovska, a former volunteer with IPPF member HERA (Health Education and Research Association), and Macedonia’s only social worker focused exclusively on HIV.
Like all people registered as living with HIV in Macedonia, Bojan picks up his medication and has regular check-ups at the Clinic for Infectious Diseases. He also remains in regular contact with social worker Rumena. “If Macedonia awards a Nobel Prize for a social worker, the award must be in her name,” he says.
Taboos and stigma around HIV mean that Bojan still feels unable to tell his family about his diagnosis.
But, as a young, well-educated student, he says he harbours few fears about the disease. “[These days] HIV is much more well-managed. The scientists are searching for a cure … western society is working very hard to destigmatise the disease.”
Things are very different in Macedonia. Myths and misinformation about HIV are rife, Bojan says – a problem stemming from the chronic lack of public information and education on HIV and AIDS.
“Older people still think that if you get HIV you will die the same week that you acquire it,” he says. “They immediately assume that you are gay, like this goes together with [HIV].
“There are also a very high number of older people who think that if you get HIV, this is your punishment for bad things that you did, for low morals,” Bojan says.
Growing up, he says, there was an no sexuality education in school at all, which has fed into the myths and misinformation surrounding HIV.
The media doesn’t help to dispel these myths. Newspapers, radio and TV rarely report on it, he says: “It’s total silence.” What media coverage there is has largely been negative, backed up by the anti-LGBTI campaigns from Macedonia’s former government, in power until June 2017. The internet and NGOs are the only real source of reliable information on living with HIV, he adds.
Discrimination is also pervasive in the health services. Bojan mentions one friend who was turned down for an operation because of their HIV status.
HIV services exist but are poorly resourced and understaffed, partly due to some medical staff avoiding coming face to face with HIV positive patients. There is only one doctor in Macedonia specialising in HIV, Milena Stefanovic, Boyan explains. “She really tries hard. She is like our mother. She [does] everything, everything.”
“I see my GP as well but I can’t speak to her in the same way that I can speak with Milena. She is the one who really knows what this means, what my problem is when I say this hurts me.”
Another problem encountered at the GP’s surgery is patient confidentiality – or the lack of. Patient files are stored manually, and doctors often leave patients’ files lying around so that anyone could catch sight of them, Bojan says. Given the taboo and stigma around the disease, this lack of privacy discourages people living with HIV from using public healthcare.
Most people living with HIV rely on NGOs to top up their care, particularly when it comes to support services and counselling. When he was first diagnosed, Bojan used a service called Stronger Together, a support network for people living with HIV that grew out of HERA.
“[Through Stronger Together] I was speaking with another HIV positive person. And this really helped me a lot, because you know you read things on the internet [about how] you can manage this, it’s not terrible, you will be ok, you will live a nearly normal life with these therapies,” he says. “But I needed someone to tell me in my own language, a personal touch.”
“My key message would be: test yourself today because every day of life gives you more time for living, if you start with treatment early. If you are HIV positive, don’t be afraid of it and find people you can speak with yourself.
“It did change my life for sure, but I learned to love my life more and to take care of myself now.”
Photos: John Spaull/ IPPF EN