Reactions of friends, family and community
Well, I hadn’t been [home] in a long time. I hadn’t been for two and a half years I mean. But I didn’t go out at all… out of… embarrassment, shame… I went down and all the relatives came to see me. By the way they all know, like: “Are you alive, how come you’re living with it, how’s this, how’s that?” They all came to see, they were all looking at me like I’m unique. They’re all looking at me from head to toe, assessing, what not… Horrible. I’m sitting at home and they’re just coming over and sitting in the living room watching me. I sit in a chair at this… dining table, there. They all look at me like this, everyone’s curious… They thought who knows, I’m falling apart, dying like there’s no help… And Dad’s like, “We eat and drink with him. So you can eat too; you won’t get AIDS. Who won’t have coffee or juice shouldn’t even come to my house”. (Ivan)
As he told us in in the previous chapter, Ivan’s friend had told many people that he was HIV. This not only had implications for him but also for his family. It was this in particular that he found devastating.
I mean dad’s like well-known in town. He had a lot of friends, a lot… As dad says you didn’t know how many people went through the house in a month, now he says only two or three people come over. The house has like died out. No one will come, everyone’s afraid. Everyone’s gossiping, you can see… Like dad says: “I’m sitting in the pub,” he’s sitting there somewhere with his friends every night and you can hear people talk, pointing at him, his son’s this and that… So it’s for dad also a bit… but he’s used to this… He doesn’t’ care anymore, whatever he hears he doesn’t care anymore. I wanted to make a fuss [about it], but my dad asked me not to. (Ivan)
Sandra’s extended family wanted to evict her from their shared home:
‘They tried to kick me out through the court because they don’t want a junkie and someone with AIDS in the house. Those were the words they used’.
Fortunately for many their families have supported them, to varying degrees. They see this support as critical in helping them to adapt to and manage their lives with HIV in the short and long term.
Nina echoes what many people said when she recalled: “Thank God I have my mother. I don’t know what I’d do without her”. (Nina)
For those who are not so fortunate the negative response of family and friends can be a significant loss. Many of them feel that it is not ill health that is necessarily limiting their quality of life but the reaction of those close to them to their illness.
Here Branko talks about how his friends stopped wanting to be around him once it got out that he was HIV positive.
I had an enormous number of friends, I... live in XXXXX [a small town], if it could be said about XXX as a town, and half of XXX knew me and know me to this day. I was friends with many people, but those friends suddenly vanished when I told them I had HIV. I have about ten friends now. [They] can be counted on the fingers of both of my hands. The people I can go to, who can come to my place and talk regularly, go out for drinks… Although I don’t hide that I have HIV from anyone, whoever I’m in contact with or communicate with and let alone something more. They’re simply afraid. I don’t know why. I can’t pinpoint it, but if there’s a girl, then they think at once that she’s probably intimate with me; now, for her not to be discriminated against like me, she avoids me because of it. (Branko)
How people will react is unpredictable. Milan recounts how disappointed he was in a friend, who he considered to be highly educated, who when he found out, his friend couldn’t bear to be around Milan.
I had this situation when my colleague wouldn’t shake my hand and he graduated from two universities, he’s a real intellectual, he’s from such a family, both of his parents are medical workers. Unlike a lady that serves food at the hospital when during my surgery she hugged me and brought food from home for three days while I was in hospital, she said: “Well, I have a son too, how should I know, he has a daughter too, we could all have it!”. And when you hear it from someone like that, anyone can help, and this man wouldn’t shake my hand… You don’t know exactly where and who you can… But I say: “Lucky children to have a mother like that.” (Milan)
Many participants talked, like Milan, about their shock that so many educated professionals were discriminatory and abusive to PLHIV. Although educating someone about HIV, transmission risks and consequences are key to reducing stigma: it is also about an individual’s empathy.
This is the story of Sandra’s experience when
she was sitting in the park feeding her kittens: |
This man started shouting: “You threw cats out of your flat, from your home, that’s what you do, you throw them out there and they become strays! I’ll send you to jail now and I’ll call the police!” And I, already being sorry to part from the kittens, and he upset me even more, my knees started shaking and I was really shaken up, and I cried a lot... I was speaking and sobbing with tears. I tried to explain how I wasn’t doing anything bad, how I was also feeding dogs. But he was still shouting at me. And I was starting to feel unwell, my ears started buzzing with the stress. I told him: “Please don’t shout at me, I am ill”. He told me: “What can you young, 20-year-old people can be ill from?!”, because he’s retired. I told him: “Let me be, I have AIDS!”, I didn’t say HIV because he wouldn’t know what it was, but I told him I had AIDS, to let me be because of it, so that I don’t get stressed, not to pass out in front of him. And he told me like this: “You have AIDS?! Shame on you! And you tell me! You AIDS person! You’re not ashamed of yourself!” And he’s shouting, yelling! And there are buildings nearby, people came out on the terraces, watching. I told him: “I’m not ashamed, it’s my illness, I even appear on television and speak about having AIDS”, and he got even worse: “Shame on you, you even appear on television, it’s obvious you’re crazy if you’re doing that and you’re not ashamed to say it!” “How can you say something like that?! I’m polite to you and you tell me I’m…”, he started insulting me and then I started insulting him. And he’s like: “You’ll infect me! You’ll infect me! You AIDS woman, it’s a shame if someone has AIDS, you’re crazy!”, and he wanted to call the police. And I beat him to it and called them myself. While I was talking to the woman who answered the 92 number, she could hear how much he was shouting at me. I even said over the phone that I had AIDS, that he had attacked me and wanted to take my telephone. And he left when I finished talking to the police. I told him: “Where are you going now that I called them to come, when you insisted?!” He said: “I’ll be back!” And the police came, I explained everything and told them: “He’s gone, he left”. And there he was, he appeared leading some old woman with him and like: “She’ll testify that that AIDS woman attacked me and wanted to infect me with AIDS and threatened me”. I said it, and the police officer himself said it as well: “She can’t testify, that old woman wasn’t here. She didn’t see what happened”. However, the old woman said: “I know, the gentleman’s a very fine man”. And so I turned out to be the bad person even though I came there to do something good: to release animals into nature, to feed them, not only them but the puppy as well, I gave water to him too. But he the police officer reprimanded him, simple, like: “You cannot talk like that to her, it’s nothing shameful and ugly, it is a good thing she told you”. However, he persisted insulting me in front of the officer, he still talked of me – the AIDS woman who should be ashamed talking about herself like that. I still don’t get it… he’s a nicely dressed gentleman, he’s no vagrant, educated… how can someone educated, let’s even call him a gentleman, speak like that, that I’m an AIDS woman and that it’s shameful to be an AIDS woman.
Why was I getting upset when the man was nothing in my life, a mere passer-by, but, Sarah, I was really fed up suffering being told:
“You’re a junkie!” – I keep quiet.
“You’re scum!”, I still keep quiet.
“You have AIDS!”, I still keep quiet.
I always have to keep quiet before these people.
And I try so hard, I appear in public and in newspapers to explain to these people that we’re not going to bite them, that we’re not going to do I don’t know what to them, that we want to live normally beside them, like they do. And they keep at it… I would not be so confused if it was someone uneducated like that, but this man seemed like he had come out of an office.
And seeing by that example, how he experienced my story, which I told him nicely, it means that most people in this town would react like that. Many would… and it is so. So it’s like, you can take it all but sometimes it can really hurt. (Sandra)
|
Tanja recounts the situation now that her neighbours know that she is HIV. The task of educating her neighbourhood seemed too large to overcome.
My neighbourhood knows, for example, and no one’s talking to me. No one. Six floors, I live on the fifth, no one’s talking to me. I don’t have a neighbour. I mean, I don’t have a neighbour. Apparently no one should communicate with me, because I can transmit it through the air, you see?.. So I put it up in the entrance hall, like… HIV this and that. Three ways of transmission, and all that. But I thought to myself “Come on, Tanja, what are you trying to do for one building, when further on three, five, ten buildings haven’t a clue how HIV is transmitted. (Tanja)
Participants living in smaller towns and rural areas stressed in their accounts that they felt they were affected more profoundly by stigma and discrimination than if they lived in cities.
I know it sounds horrible, but it disgusts me! All these small towns are the same story: everyone knows everyone else and everyone tries to pin something on everyone else! It’s horrible, horrible! That was the main reason why I went to XXXX (large town). (Nikola)
Although it does appear to depend in part on the individual, this next account illustrates that proactive steps to educate people about HIV and transmission risks can make a difference.
Sandra’s friends would not believe her about the low risks of transmission from casual contact so she encouraged them to speak to a doctor about it. Once they had this information they were happy for her to spend time with them and their daughter. Being included and not feared made a positive difference to Sandra’s life and self-esteem. She recalls the first time they let her look after their child and how good it felt.
I have a friend in XXXX who’s 30 years older than me. He has a wife now and a little two year old girl... Only after he found out from a doctor that it can’t be transmitted just like that, did he relax. But he told me honestly “I went and asked” and so we had an open conversation. I had also told him to make sure to ask a doctor when he’s getting a check up, because he went there to ask about it. I told him “ask any doctor, I insist you ask, because I’m not going to try to convince you about anything any more”. And then they let me walk the girl on my own about ten days ago through the centre, the park in XXXX, where everybody know me. And I was happy to walk her. And everybody looked at us, me and her, sort of with amazement. I gave her candy, I put it in her hand, so I’m touching her, everything. It was hot, so I was perspiring. But no problem. The shop assistant who sold us the candy acted normal, and everything was sort of quite OK. So I can see that, all the brochures I gave him to read, and he saw me on TV, so he knew if I said something in public I’m not going to lie. But until he talked to the doctor, he wasn’t quite clear on it. (Sandra)
Knowledge is important, as is the willingness to learn about it.
For those who have the support of their family and friends, life is much easier. Even for those who encounter or fear hostility from their communities,if they have familial support they feel better able to deal with it. Importantly not everyone encounters discrimination, there are some exceptions:
Well, since I found out I naturally haven’t told the whole town, but I told my closest circle of friends and I thought… that if any one of them had a problem with it then I don’t need them, what do I need friends like that for who’ll suddenly have a problem with it, we were friends and now we’re not anymore because of it. Then ok, they shouldn’t be my friends. My relatives accepted it the way they did. They all know, they all know what it is, how it’s transmitted, how it develops, the course of the illness, how long you can live with it, they know everything and no one has any problems at all. (Vesna)
For those who don’t have the support of their families or friends and/ or those who are fearful of the social consequences of HIV it can be very lonely. However much they are themselves not a risk.
I’m trying not to infect anyone, if I can give someone some advice, I don’t know, in this sense whoever wants to listen to me I’m always prepared to talk to people… Well the disease isolates one a lot, you know… It’s not all the same to people who don’t have it… I can understand these people too, but what can you do… At the moment here the situation is that the disease is very isolating. (Dejan)
Company and support can be especially important when you are not feeling well. Even if this is from pets not people!
When I’m in a bad mood and I start crying… When I cry, I cry very quietly, I don’t mean to but the tears just fall… There he is – coming over! Then he lies down somewhere, sniffs around… I kiss him all the time, and then he like touches me with his wet muzzle, touches me like, you know… It’s a reason to live, to live for someone. (Dragana)
The participants we spoke to also said that the physical and social consequences make you more vulnerable to stress.
Being alone or with limited support makes all the rest of the difficulties, for example accessing healthcare, or trying to get a job or financial support so much harder.
Yes, you know, the sensation of stress, it becomes much stronger when you have lost your immunity. This is the general problem… It’s more stressful, you know. It is maybe ten times stronger because you don’t have your natural defence system any more. For example, some minor situations make you completely disordered. (Mašan)
|
