BEING POSITIV : BITI POZITIVAN

I really don’t expect anything else, just to be given the chance, the opportunity to fit in the society and live my own life, get a job, work, I’m not asking for anything else. But it seems to be too much, why I don’t understand.
But alright I won’t do anything and if I wanted just something – some help, take advantage wherever I can, if I were such a person I’d understand their stopping me so… I’m not such a person, I don’t like asking other people for help… Simply because I’ve been on my own since a very young age…
I just don’t understand the problem, what it’s about here, why people are so bigoted here.
People are not informed, they don’t know what it’s all about, nor what it is, they just heard about HIV, that it’s dangerous, that these are all criminals, junkies and insane people who have this disease and you should absolutely have no contact with them, isolate them, it’s best if we bring back Hitler and the gas chambers and let’s go for a shower! … At least that’s what I feel it’s like here, and since your study’s asking about feelings and experiences and events one’s been through, there… That’s what I’ve experienced in the last three years… Although if you remember when we met the first time I was really positive, I thought it would work out somehow: you’re at home, in your country… What home, there is no home! Where’s home?! Your country… People might understand me better here, I’m not a foreigner, I don’t need a residence or working permit… No! Here they wouldn’t let me go out of the house, let alone something else, only if they could! How it could come to that in this country, I don’t know!
And finally, the most important thing for me in all this, and as I met people and as I saw the way they lived, what they’re longing for and so on, no one is in that difficult a situation… No one’s asking for something impossible, but just to let us live, fit in this society, accept us the way it is, to see the disease the way it is, it’s not.. It’s a dangerous disease and all, but you can’t get infected so easily. Only people just don’t do that, they don’t get informed completely, they make the same mistakes I made, for example, with the disease. For a while, I mentioned it at the beginning, I just ignored the disease although it was before my eyes the whole time, I didn’t avoid anyone, I was friends with everyone, whether they’re ill, healthy, junkie or straight, it didn’t matter, it mattered what the person was like and that’s what people should understand here; it’s people, and not be so strongly prejudiced… It’s hard for me to understand... (Dejan)

17th February

Here, after 10 days of taking this new therapy, the first 5, 6 days like I felt horrible: I get up in the morning all sleepy, I can hardly wake up, half a day, until three, four in the afternoon it’s the same as with the last therapy, it was the same for the first 5, 6 days: like insomnia until 4, 5 in the afternoon, I can’t sober up, come to all that easy. And then, now it’s been some 5, 6 days the same thing happening. But now it’s already since the 7th, 8th day I’ve been feeling much better. Like in the morning I have coffee, have a shower and come to. I feel some changes, I’m feeling better, I feel better, fewer health problems, the temperature’s dropped, my temperature’s dropped, glands a little, they can’t disappear in 7 days, but I don’t know… It’s all there, the glands are the biggest problem suffocating me and all. Like this therapy is great for HIV, it’s ok now, I function normally, I wake up in the morning great, whenever I get up, both if I get up two three hours earlier and two, three hours later like than the usual time I feel ok, I can work, I’m physically fit I guess, I don’t know, I’ll see what it will be like, I have to work… The only problem is that the winter is also very bad for me… (Ivan)

23rd March

1. Feelings related to XXXXX XXXXX in XXXX Street (treatment at a state medical facility) are feelings connected to humiliation, coercion, blackmail, incompetence and all that’s bad in people is represented in XXXX and its staff.
2. With the gynaecologist at XXXX they were wonderful but still they’re busy and you wait 8 hours at a time for examination! – crowded! Always the last – discriminated!!!
3. Taking blood at the local Dom zdravlja is frustrating because I have to tell all the staff I’m HIV+ and blah blah… It frustrates me that I’m like an alien! It’s hard for me to visit [different] doctors all the time. It’s best when I can have everything done at the Infective (HIV) Clinic.
4. Blood and urine analysis results (chemistry and biochemistry) it would be easier (physically, more comfortable) if I could do it like before at the HIV Clinic. (Ana)

28th March

I go to get ARV therapy at the Infective (HIV) Clinic. I find out from the doctors there is no combivir and no reagents for PCR and CD4 analyses. I wonder how it will be in the future with medicines and reagents? Will all the medicines be cancelled? We have been living with HIV for quite some time – me for 20-22 years – quite some time says the society!? Anxiety and uncertainty = fear always present. They treat us and experts produce stress with HIV + people. (Ana)

12th May

But, I mean I’m alive, I can’t stay at home, close up, and my circle of friends is getting smaller every day. I told a few of them cos they can all see something’s wrong with me, and I can’t keep quiet… They ask you every day what’s going on with you. Where you’re going, where you’ve been. Like someone comes over, they’re so free so they look into my drawer, open it and see a ton of pills, strange ones. What can I tell them, it’s for my head?! What? A mate who stayed over, he took the liberty, I gave it to him, I left him alone in the flat, I wasn’t in the flat, he was alone in the flat, he was at the computer playing, before I got back he happened to go through my flat and he found HIV pills, read the directions and saw what it was. I got back and he wasn’t there, he wrote me a note and that’s it. No one wants to listen to explanations, I mean… They all give you the story: I’m looking for an honest mate, friend, and when they find out the worst, the hardest, there are no mates or friends or brother or father or mother, there’s no one. There’s only, I don’t know, a number to dial when it’s the hardest for you and that’s it. Like you have, you call the counselling service from time to time and they wash your brain like that, but they wash it in a positive sense, sort it out a little, it’s always nice to let it out a little about HIV, to tell someone. In a way this too feels good now, talking… It’s a little easier for me, as if I had a talk with someone… So that… It’s good for my sleep, I’ll go to bed now and I hope I’ll fall asleep, I don’t know… The temperature will drop by tomorrow so we’ll see, I don’t know… (Ivan)

2nd July

[I went to try to see a] Dentist, who wouldn’t see me and wouldn’t treat me. They sent me to the clinic in XXXX but I can’t go there because I can’t pay for treatment, my insurance doesn’t cover it.
[What are my feelings?] Unfortunately very bad! There are exceptions, but almost everywhere you’re discriminated precisely because of your disease!!!
It makes me wonder really and I don’t think it’s sensible for experts to treat HIV+ patients like that. They simply ignore you everywhere, especially when it’s well known that a positive person is not financially capable of surviving, they know we don’t have the possibilities, we’re asking for some understanding, tolerance! I mostly have the feeling I’m maybe really trash, because I’m being treated like it. (Dejan)

15th September

“I’m living one life, the most miserable way I can”!
This is the sentence of the day, it won’t leave me since I woke up, it saw me off to my dreams last night when I was falling asleep. It was born yesterday around noon.
I felt like crying there in the middle of XXXX [big shop] because I still have a big heart so I can feel sorry for myself… Although it’s usually too late and futile feeling sorry for oneself because someone else has always come before me. So yesterday once more I reached bottom, and it was just after I’d got the money. Today the first sentence “I’m living one life, the most miserable way I can” got more sense. Today I’m hungry and full of dry food and too poor to buy something healthier. For me now new potatoes, greens and strawberries are a big luxury, there are no vitamins either for me this month.
Trying to get a job.
I’d get a job and I’ll try to give reasons why I can’t work somewhere in the column NO, and I’ll write the reasons for finding a job in the column YES.

NO
1. I don’t know anyone who’d hire me
2. No – because they run away from the HIV inside me.
3. No – because I can’t stand the heat.
4. No – because I’m breaking the law if I get a job and I’m getting
a pension as someone without a work card and work ability.
5. No – because how could I work in XXXX and in the NGO
6. No – café as an option, but they wouldn’t take me because of HIV
7. No – non-stop [shop] because of AIDS and I don’t know maths.
8. I don’t know where I could work and be un-registered, undisclosed, unexposed to working with drink and food because of AIDS, unexposed to looks because I’d be reported and immediately I’d lose my pension.
9. No – because I will not break the law.
10. No – Can I physically take the work?

YES
1. I need the money (for food – for the bills – for hygiene [materials] – for clothes – for blinds and 300 dinar mirror – for the seaside).
2. For vitamins and medicines (that in particular).

The 10 No’s were the first 10 reasons that crossed my mind, because of which I was given a pension and I don’t have the work ability, but these are 10 realistic, real reasons, and not 10 excuses for me not to work.
The 2 Yes’s are also realistic reasons, they are fewer than the No’s, but they are worth more than this and infinite times more powerful than all the No’s.
Will I be this miserable and helpless for the rest of my life? And I’m really trying to be cheerful, kind and smiling. “I’m living life in the most miserable way I can… and I’m dragging the AIDS virus with me because it’s the only one that can understand me.” (Sandra)

6th November

What needs to be done?
More about the socio-legal aspect of HIV patients. Visibility of the discrimination problem. About the social inclusion of PLWH – reasons why PLHIV are so excluded, stigma and discrimination, and especially SELF-DISCRIMINTION.
The relations between patients and doctors need to be deepened!!! Medical support is not sufficient. Stronger connections need to be made – doctors’ care (reproductive health, nutrition, sex life…), medical workers’ for PLHIV. More possibilities to apply ARV better (more successfully).
More knowledge about ART gives more possibilities to the patient. If they know about something (have the knowledge) then they can ask for it from the doctor.

Self-help, support
Auto-stigma, stigma and discrimination
Unavailability of medicines – latest medicines, tests and the like
Legal rights
Reproductive health
Work ability
About what it’s like being a patient with chronic illness HIV/AIDS
Lack of information about latest medicines for HIV/AIDS
Most general information from the HIV community in Europe

Help the patients to better understand their rights in the medical setting. They should know they have the right to the latest medicines and more medicines and tests, as well as the right to complain – to rebel against the Ministry spending the citizens’ money, but in what way? Teach them to ask for their rights. (Ana)

19th December

So, what I could give this study I did. As the study’s coming to an end I can say I’m glad I’ve participated in it and… If the results of this study help future generations… and of course many other people to understand the disease and… people like me. If it helps this then I’m particularly pleased. (Tanja)