Living
”With everything I know and can do today, it’s not actually a problem to live with HIV. But it is still something that chafes.”
From a purely medical perspective, the history of HIV has involved sensational leaps. But it is at a surprising standstill from a social perspective.
Getting HIV today is radically different to thirty years ago. The automatic connection to AIDS and death has been broken. Moreover, effective treament means that HIV is not passed on to others. But on certain levels, it is as if none of this has happened. The same old prejudices and fears are recreated over and over in the society.
This can make everyday life unnecessarily difficult for those of us living with HIV. Even if we never fall ill or even feel that we are living with HIV, it becomes obvious in encounters with others. Almost everyone has felt unsure about disclosing their HIV status, according to a study carried out by the Public Health Agency of Sweden. HIV is about everyday life.
When I was at the pharmacy, they put my medications in triple plastic bags.
”Hey”, I said. ”Don’t you care about the environment?”
The answer made it quite clear what I am expected to feel. ”Surely you don’t want people to see?”
I’m not so bothered by my own HIV status. Once you live with it, it isn’t something you think about a lot. It doesn’t do anything to me. I think my life is pretty good.
That whole situation when you’re out, flirting, dancing. Being offered drinks at the bar. And then that question comes up. When should I tell? Right there at the club? Or when we end up in bed?
Of course you get turned down. You get turned down quite often. Sometimes it feels so unnecessary to take all those steps, almost like you’re cheating. ”Um, there’s something I have to tell you. I have HIV.”
Of course there is a pause. Without fail. Questions. And it often ends there, doesn’t go anywhere. A no isn’t great. You feel like rotten meat when it happens time and again. A second-class person. Now that there is no longer a risk, I don’t have a duty to disclose my status. But I wonder if that really changes anything. Even if you don’t have to tell the person before you have sex – what do you do if you meet the love of your life? Then you would have to say something and so the risk of being turned down is there anyway.
Time passes.
I turned 30, I turned 40. It was so amazing that I had to pinch myself. It was unimaginable that I would grow old. Liver, kidneys, mood and energy. Everything looks good now.
After I got HIV, I spend a lot of time alone. I was, or I became, philosophical.
I often went off by myself, felt the wind blowing in my hair and things like that. There was a hill close to where I lived where I could be by myself. I wasn’t that social. Instead, I spent my time reading fantasy books and dealing with my thoughts. It wasn’t bad for me.
It took a year before I dared to tell my family. I went around for a year, maybe a year and half, before telling them. I thought that they would avoid me. Of course, that is also a part of the shame. When I finally gathered my courage and got it out, everything was the same as before.
Ok, my family said. Shall we eat? I thought that people would react differently.
Toothbrushing has become more important.
The teeth get degraded. I have been to the dentist so many times, but I can’t afford it anymore. I try to save money to be able to go back, but it gets harder to do it the longer it takes. Now I’m scared that they will have to drill a lot. I think a lot about the future in relation to my teeth and I try to take care of myself.
I didn’t know anything about HIV.
Just after I got the diagnosis, the doctor came in and said: ”You will live as long as everyone else. You can do everything that others do: feel good, have children, have sex.” Apparently, it was not that bloody bad after all. I had many questions, about travelling and sports and parenthood. I wanted to know everything!
”How do I tell people?” was another one of my questions. The answer I got has stuck with me until today. ”We don’t think that you should.” My parents still don’t know. Only now, three years later, am I planning to tell them. It’s not right of them to recommend not telling.
Instead, I wish they would say: ”It’s up to you who you want to tell and when. You don’t have to but if you feel that you are able to and want to, then we think that you should tell. Carry it with your loved ones.”
HIV is a part of me.
It has helped me to form my mentality and I am happy about the person I have become. I would not have wanted to not have that experience. HIV affects me in that way, I still feel that I am growing – there is always more to learn, I want to understand how everything is connected. I think a lot about the future. When I am older, I will be even wiser and more humble.