What do people think having HIV means here?

People think it means death. (Vesna)

People think it’s still a topic for scandal. (Peđa)

People think that it means you are a whore. (Boba)

People think that it means
that you are a junkie. (Marina)

It means… ‘If I blow in your direction,
you’ll catch it’. (Vesna)

It means… ‘Get away from me’. (Tanja)

It does not mean any of these things.

Having HIV does not = death.
HIV can = living.

It is not just about risk groups. It is about everyone being at risk.
People refuse to think it can happen to them.

The people whose stories you will read about contracted HIV from:

Injecting drug use
Blood transfusions
Sexual relations- both same sex and heterosexual
relationships, most of which were long term and exclusive.

The people that it has happened to are like you.

Can you live with HIV?

With access to consistent, regular treatment HIV is a chronic illness.
Such treatment is provided universally by both the states of Serbia and of Montenegro.

The knowledge of it [my HIV diagnosis], it was like the end of the world and at that moment I completely closed up, I didn’t want to and I didn’t have energy to communicate with anyone let alone with HIV positive people. When I went to the Clinic for the first time, and when I saw all those people just sitting there and chatting, communicating, they behaved as if they were in an ordinary Health Centre. I was watching them, I went there with an NGO volunteer and I asked her: “Are these people ill?” she says: “Yes”. I said, “ I cannot understand how they are just like that…” she says: “You don’t understand, they live an ordinary life and you will as soon as you recover”, I said: “Fine, let it be…”
The next visit was already better, the next more so and then I started communicating with them. I see them plan things, I don’t know, to go to Egypt for the summer, Tunisia, I don’t know… Living, an ordinary life. Then I wondered: “If they can, why am I different?” Well, I cannot go to Egypt or Tunisia but I can think in a positive way. Then I started to convince myself that it had simply happened, so what now? I am living with that while I’m alive. (Stefan)

If HIV is detected early, if HIV treatment is delivered by the system and taken by if the patient consistently then life expectancy with an HIV diagnosis can be long. Some of the people whose stories you are reading in this booklet have been living with HIV for 22 years already.

What does an HIV positive person look like?

Like anyone else.

‘Here, you see, I’m not a zombie, I’m not what people think – they don’t have a clue what an HIV person looks like. I say of the [HIV positive] people I’ve met, they look much better than those who are healthy, concerning their mental and physical health… [She said to me] “You’re so positive.”, and I said: “From head to toe.”, and she said: “What do you mean?” and I said: “I’m a positive person in the true sense!”, and she hugged me and kissed me and said: “I can’t believe someone can be like this, I thought you were an athlete!” (Milan)

I went there and saw these chubby people, you know – I could feel the energy, and I said: “You’re awfully chubby for an HIV person!” (laughs). (Ana)

Having HIV does not mean that your life, including your sex life, is over. Many PLHIV are active, living and loving. Some are happy in relationships. A few have had children since they have been HIV – and they have been healthy children – and some others are considering having them. These individuals show that there is so much life and living left after an HIV diagnosis.

I want to live. I want to have a quality life. I don’t want to stay at home. I want to feel well, I want to do this and also do something else. I fixed up the flat with my boyfriend. We renovated the whole thing, we renovated the garden, we did paint work… Like… I’m active still. I simply take care of myself and that’s it, I don’t have the thing: “Oh someday I’ll be all healthy!” I feel healthy, like all people! I have a disease I take care of and that’s it, I really can’t foresee my future, nor do I try to, I’m focused on the near future, not on the far future. (Ana)

What makes it difficult to live with HIV?

Things are much better than they were, but living with HIV is hard.

1 TREATING HIV

Maintaining your health if you are HIV positive can be difficult: some problems remain in treatment delivery in both Serbia and Montenegro.

The focus of this booklet is not on HIV treatment access and experience, but on stigma and discrimination in these settings. Serbia and Montenegro have different treatment settings, which reflect different political processes and circumstances in each country. Therefore separate country specific reports have been produced from this research and are being used in discussions with key stakeholders. In Serbia the report focuses on improving the regularity of access to monitoring tests for all patients in need (CD4 and PCR). Montenegro’s report focuses on the challenges of establishing an independent care and delivery system and how this is experienced by PLHIV.
Although this booklet does not focus on the experience of HIV treatment (therapy and monitoring tests), it is crucial that the influence of treatment availability on PLHIV’s physical and emotional ability to live positively with HIV is not underestimated. All the participants involved in this research are influenced daily by anxieties around treatment. Managing this uncertainty is particularly difficult given that it takes place within the broader context of the social insecurity of living in a transitional setting.
Treatment delivery is improving. But even when treatment is available constantly the demands of HIV treatment on the individual taking it are serious.

For further information on the treatment situation in Serbia and Montenegro for PLHIV see:

• Bernays, S., Janković Terzić, K, & Rhodes, T. 2008. The need for consistent access to treatment monitoring tests: findings from a qualitative prospective study in Serbia. LSHTM: London.
• Bernays, S., Rhodes, T. & Janković Terzić, K. 2007. Living with HIV in Montenegro. LSHTM: London.
• Bernays, S., Rhodes, T. & Prodanović, A. 2007. HIV treatment access, delivery and uncertainty: a qualitative study in Serbia and Montenegro. UNDP: Belgrade.

2 STIGMA of HIV:
a key constraint on quality of life
in Serbia and in Montenegro

Medical developments in HIV treatment have transformed HIV from a terrifying death sentence to a manageable chronic illness. Whilst there continue to be some difficulties here in relation to the continuous availability of appropriate treatment, this means that PLHIV can live full and active lives within mainstream society.
Medically this reality is possible: socially it remains very difficult. Sociologically HIV is a specific illness unlike other chronic diseases. The study has found that the responses of other people to HIV is the main constraint now on an individual’s health and quality of life.

• Loneliness can be a key characteristic in the lives of some PLHIV. One participant described it as the ‘silent killer’. The tenacious stigma of HIV makes it so difficult to continue normal life that some feel forced to cut themselves off from their lives before.
• Reduced quality of life is not only due to physical problems. It is a consequence of HIV being a social illness, with potentially devastating consequences.
• This is the focus of this booklet:

What is it like living with HIV by those who are:

Why it’s so hard to tell you that I’m HIV
Reactions of family, friends and communities
Access to healthcare
Discrimination in access to employment
Access to financial and psychosocial support
HIV happens everyday: diaries