In the months after my diagnosis, I went through many disturbing emotions and thoughts that needed to be faced and dealt with. But at the same time something new inside of me slowly developed, a new sense of clarity about who I am and also a renewed appreciation for being alive, realizing the finality of life, enabling me to be more focused on important and positive things.
Before getting infected I didn’t know too much about HIV, the only person I ever knew about that was positive was one of my ex-boyfriends. He got infected after we had split up and through him I knew a little bit about what living with HIV meant and what the status of modern medications was. But this didn’t stop all the awful images and thoughts flooding into my mind after I was told of my own infection.
In the beginning there was a lot of shame that I felt for being positive. Not only was I gay, but now also I was HIV positive, which my mind told me must mean that I did something shameful, something filthy, something very bad. I felt like now I belonged to a group of people who had irresponsibly thrown away their lives and should hide away in the shadows. I was scared that people would be disgusted with me and not wanting to touch, hug or kiss me anymore. I was scared that people would look at me disregarding and cold and think ‘Look at him, he’s one of them’. Today I know these thoughts and emotions were coming from the stigma surrounding HIV which also lived inside of me. Luckily, the people close to me didn’t behave in any way like I feared. In fact I am lucky to say that I only had positive experiences when revealing my infection to people around me.
Physically the first weeks felt like I had been stained, I was feeling very uncomfortable inside my own body. I constantly imagined my blood being full of viruses and how they had infiltrated my whole system. It was an awful feeling. This lasted until I talked to a friend about it and was reminded that the body always contains different organisms, bacteria, viruses, parasites etc, and that the HIV was just another one of those (albeit one that slowly destroys the body). After this conversation these thoughts and feelings started to become less and eventually stopped altogether.
Going to the doctor for the first time with the disease was difficult. It was about 10 days after I got diagnosed and part of me was still in denial and shock. I had made an appointment at a local clinic specialised to HIV infections and when I was sitting there in front of the doctor listening to what she was saying it made the whole situation so much more real. A part of me had still been hoping this was all just a bad dream that I was gonna wake up from. But as soon as I entered this cycle of regular doctor’s appointments, blood test, health checks there was no more running away. This was real, this was happening to me. The variety of handouts in the waiting room about things to consider when HIV positive, although being helpful information, made it just more complicated for me at first. There was suddenly so much to think about, so much to deal with, I felt overwhelmed and part of me wanted to just run away.
The doctor took well care of all the medical aspects of the infection. Psychologically though I still felt wounded and in need of consolation. I felt very depressed for a good few months, the whole summer was dark for me, I didn’t notice it very much. I went to AIDS Hilfe, the German AIDS help organisation, for some general advice on what I needed to do and where I could get some help. It was suggested that I maybe join a group or that I would do a psychotherapy to help me deal with the situation. It would have helped if I had other friends that were positive that I could talk to, but at the time I didn’t have any. In August that year, three months after the diagnosis, I joined a medical study as a test person for a new HIV medication. It was the last stage of testing of the drug before being released. For two weeks I stayed in a hospital ward with other positive people. It was here that I was finally able to relax more and get a more normalized perspective on having HIV. All the other study participants had been infected much longer than I had and had been living with the virus for years. I was able to lean on the strength they had developed over time and learn from them that life goes on and that being positive is just one aspect of your life, something that does not need to dictate who you are, nor does it in fact change that much in your daily life after all. I started to understand that with modern treatment you can live a life almost as normal as anyone else and even live to about the same age as healthy people.
After this experience my depression started to go away and I found a new sense of gratitude for being alive. In a way I had come close to death with the diagnosis, not physically, but in my mind. I had faced the finality of life, for a moment I had felt everything being taken away from me. Only to realize later that in the end things weren’t so bad and my life didn’t stop. In the months following I found myself being more focused on positive aspects in my life, not willing to waste more time on things that didn’t make sense for me. I ended a few friendships or rather acquaintances that were half-baked and didn’t really lead to anything, concentrating more on relationships that I saw were worth investing in. So in a way my diagnosis sharpened my perception and that was a good thing. It was a very dark summer, but with a silver lining at the end and today I see my infection as an opportunity, rather than a burden. An opportunity to appreciate life more but also an opportunity to transcend the identification with the physical form and find myself beyond it.
My Life With HIV 