International AIDS 2014 delegates to share their experience of living with HIV.
I was a blood donor and there was a problem with the blood. I was told I was HIV positive over the phone whilst at work and it was a massive shock. My parents didn’t know I was gay. I could tell them I had HIV and I knew they would support me because it is a medical condition. But being gay is still seen as something very bad in Macedonia.
I started treatment almost straight away. But in Macedonia we sometimes struggle with the supply of HIV medications. I was on one type of medication and then, all of a sudden, the country stopped receiving shipment of that drug. I then had to start a different treatment and I will now always have resistance to that initial drug. Access to treatment, making sure that the drugs are always available, is a major thing my country needs to improve.
After a while I started to realise that I could do something to help other people diagnosed positive. Through my work in this field I got more confidence and I decided to tell my friends and family that I was gay and that is how I got HIV.
They really didn’t take it well. Stigma is still an issue that we face today in Macedonia. People need more education about HIV, and to know that being gay isn’t a bad thing. To fight stigma we need to educate people.
[Since diagnosis] I have learned that I am strong. I feel like I now have a purpose in life and I try to help other people going through what I did. From coming to the conference I can see what my country can do to improve and to support people living with HIV.
I found out I was HIV positive when I went for my first pregnancy check-up at the antenatal clinic. At that time there was nothing about HIV in PNG; zero in 1997. So there was no AIDS council, no programs, no support — nothing.
I was told I was positive by my gynaecologist and just sent home. I told my husband, and asked that he go for a test; they checked him and he was also positive. But he denied it. “It’s not our blood,” he said. “They mixed it up in a laboratory.”
I never got any counselling, I was left totally alone. When I had my baby I was put in the infectious diseases ward and it freaked me out. It was a very tough time for me. When I came back to my home with my baby I was the talk of the community; people would look at me, stare at me, and whisper.
I disclosed my status publically in 2002, which helped change things. And going on treatment as well changed things. Then I got invited to international meetings about HIV, and that made people curious and allowed me to give them information. I became a teacher as well as a person they could see living with HIV.
Diagnosis has helped me meet a lot of people with different perspectives; I get to meet people from all over the world. At first I was a very narrow-minded person and I saw things in black and white, but meeting all these people has helped me to be more aware of the struggles that other people face.
Within our country the trend of the epidemic is more concentrated now within key-affected populations and coming to this conference I have been able to get lots of ideas of how to help. Many people have died due to psychosocial reasons and in PNG there is absolutely no focus or support in this area.
Robert, 35 (pictured).
I discovered I was HIV-positive when I went to enlist in the US military. I went through processing and found out after my medical examination. My family didn’t know about my status for a long time — at least five years — and actually, I never told them willingly. They found out because I was prosecuted for non-disclosure.
Where I’m originally from, Louisiana, they have HIV-specific laws that criminalise non-disclosure and transmission of HIV. I was incarcerated for six months and had to register as a sex offender.
In Louisiana, like most of the South in America, there is a lot of homophobia and the stigma surrounding HIV is very great — almost greater now than it’s ever been. And that stigma is enshrined in the law.
But I’m an advocate now, and I talk about HIV criminalisation and awareness so that other people living with HIV can be aware of these laws and also to show society how negatively they affect people.
These laws are still something that we are struggling against and trying to appeal. Bringing awareness and speaking out has been a very positive experience, and I’m going to continue to do that because there is a need for people to see there are others just like them.
To be able to come together [at conference] and acknowledge what our differences and similarities are, and just learning that even though we are from different places we all are fighting the same fight — that’s really supportive and encouraging and makes you confident that we are not alone in this. And that’s a comfort, knowing we’re not alone.