I HAVE BEEN LIVING WITH HIV FOR TEN YEARS NOW
«Ageing with HIV – A lifecycle approach» is a project developed by the The European AIDS Treatment Group which aims to identify challenges and special characteristics in the process of Ageing with HIV in 3 distinct age groups: children and adolescents up to the age of 24, people over 50 and people 24 – 50 years old. This is the testimony of a woman who was informed about living with HIV around the age of 10.
«I cannot believe that 10 years passed so fast. When I was diagnosed, I knew nothing about HIV/AIDS. Well, I knew that it’s an awful thing and that it will kill you; maybe because of that, one of my first questions was related to the life expectancy.
In 2007 the life expectancy was 45. Or at least, that’s what they have told me and it got stuck to my brain for years and years. At that time it seemed the most important question that I could ask.
At that time, as I was virgin, it is not certain how I contracted the virus but the doctors have assumed that I was infected while I had been infected while I was a child, as you for sure heard about the major nosocomial HIV epidemic that Romania experienced at the end of the 80s.
There have been lots of ups and downs, both emotionally and physically. Somehow, I have always found the strength to overcome these challenges.
Like most of the people who are living with HIV today, I had many questions:
- When am I going to die?
- Will I ever be able to have a partner or to have a family?
- How will my friends, colleagues react when they find out about my HIV status?
- Are there any other people just like me?
And no one was able to answer to these questions that were tormenting me.
Coming from a medium size town from the South of Romania, finding an out-of-the-closet person living with HIV was a bit hard; now when I’m thinking of this, I am sure my life would have been different if I had had the support of one my HIV peers.
However, I consider myself lucky as I had the support of my family and my friends but most of the newly diagnosed HIV youngsters don’t have this luck. It was very difficult for my mom to cope with my diagnosis as all she knew about HIV was that it will kill me.
I have started reading more and more about HIV/AIDS and step by step, information by information acquired, almost all my fears related to HIV have diminished over the years. I knew that if I take my medication diligently, I could live a long, healthy life.
Whenever I’m talking about my journey as a young person living with HIV, I’ve always bring luck into the subject.
So, it happened with my ART. I do experience some side-effects but comparing with the benefits of the treatment, the side-effects are minor.
Unfortunately, my HIV peers face lots of side-effects and have changed lots of formulations which easily lead to problems related to adherence. Also because most of the young people in Romania were infected through nosocomial infection during the communism years, those that had the luck to survive, experience the treatment fatigue.
Even though, I consider myself lucky…one of the biggest challenges of living with HIV remains the stigma and discrimination associated with the infection.
Discrimination and stigma is everywhere, even if we talk about the healthcare system; not once, I was discriminated at the dentist, trying to justify themselves that don’t have special equipment for treating me.
An HIV-positive diagnosis does not mean to give up relationships and sex BUT dating continues being one of the most difficult parts in my life. Well, maybe not dating but keeping a long-term relationship with an HIV-negative partner may be quite challenging; maybe not more than for others.
Although HIV was never the reason for which the relationships ended, it has, for sure been one of the factors that led to it.
I try to be forth coming with my partners and disclose my status on the first hand and in that moment, I can see that they back off because they are afraid. Of course, this fear comes from the fact that they don’t have enough information about HIV and how is transmitted; most of them thinking that condoms are not safe enough, not to mention that they have never heard about treatment as prevention.
Maybe that, now, when PrEP is becoming more and more popular, this will become less and less of an issue. However, PrEP is not yet available in Romania.
Because it can get tiring of explaining to a possible partner that having sex with an HIV positive person while being undetectable is not risky; of course, while maintaining the ART. And this education should start from the health providers.
Now, I’m not worrying about dying prematurely, I’ve started to be a bit more concerned about how the body will react to long term exposure to the antiretroviral treatment.
I would be lying if I would say that I don’t have my off days, when I’m sad and scared, but I’ve learnt to embrace my HIV status and to make a difference on the lives of young people as a HIV activist».