Troby
PREVENTION
THE PSYCHOLOGICAL PERSPECTIVE
In this perspective I want to honour the lives of my friends that died of AIDS in the early period of the disease, and to all people that now are living with HIV or AIDS, regardless of how unequal the distribution of resources are. My drive for working on HIV prevention is exclusively dedicated to you who have a daily battle against the disease, and all children, youth, women and men who are affected by the disease. I hope that we, who have not yet been infected by the virus would wake up to understand that this is a fight that we all need to mobiles for in, order to achieve a healthier and better world, free from prejudice.
Please note: This text is from a global perspective, and if you read it, living in a Western European country or a country well developed in terms of health and medical treatment, you might find the text less applicable than most other people in the world, especially where the disease is affecting many people.
The psychological perspective is first and foremost about people living with HIV or AIDS and the anguish and feelings of guilt they may have, because they are carriers of the virus and depending on in what context they have contracted it. A person who knows s/he is a carrier of HIV is often afraid of what will happen to him/her, how long their life will be and whether it will lead to a social ostracism or not. The thoughts are usually directed towards a partner, the family, parents, children, relatives and friends. The shame of being infected is also strong and needs to be addressed professionally.
I have been working on HIV prevention for a long time now, and I remember the time during the 1980s, when the disease was new and the confusion was obvious. A lot of people, including many of my friends and myself, felt a great stress as we where starting our own sexual life. Where did the disease come from? How did you get infected and who got infected? As Sweden turned away from the traditional way of meeting spouses, through family, the best way of finding a partner was in discos and bars. But how could you protect yourself in case you found the right one? How where you sure the person in front of you were not infected? Then as people started to die from the disease questions where raised what and why this was happening? What had went wrong, and were there any people to blame for this? (Because this is what people often try to focus on – finding someone to hold responsible for things we cannot understand or deal with ourselves.)
I turned out to be one of the lucky ones not being or becoming infected with this democratic terrorist. But when some friends and colleges died of this virus, I felt a strong need to do something about this. I guess it was one of the reasons why I started working on HIV prevention. I did not want any more people to face and try to cope the strains someone living with HIV or AIDS had to stand.
This short glint from my background contains psychological strains, even though I never caught the disease. This might tell us just a little bit about the difficulties people living with the disease are dealing with from a psychological point of view. I can never put myself in the situation of someone who lives with HIV or AIDS, but I want to believe that I can at least try to recognise some of the thoughts and feelings present in the lives of someone dealing with the disease on an every day basis.
People living with HIV or AIDS and who have access to ART have to take these medicines every day through out their lives. They also have to live with the risk that the virus could develop resistance to the medicine if they forget to take them for one, two or three days. Before ARTs were available (1996), getting an HIV diagnosis was a death sentence. A friend of mine said he had put all his efforts into coping with the test result and that he had to adjust his way of living to the fact that he was just going to live for another five or six years, but then, after 1996 he had a major crisis, since he was told he might live for another 10-20 years. He found this hard to cope with and he committed suicide after the five-six years he had already accepted. Some other friends with HIV did not want to take the medicines for the same reason – they had already planned for not surviving. At this time, it was found that the need for good friends and socially/psychologically skilled health care workers was important to “get them on the right track”, to make them see that life was worth living even though they had to take huge amounts of medicines every day, and sometimes with severe side effects.
Even today, with the new generations of ARTs, there is no guarantee for people taking these medicines that they will work for the rest of their lives. It is impossible for anyone to tell if the virus will develop resistance towards the medicines or not. This is a psychological pressure most people living with HIV carry in their thoughts on a daily basis. The health care system must have awareness about this and needs to offer support for counselling, not only for the physical and medical needs, but also for the psychological needs of these persons.
As in the case of Gogo Delamini, presented in the Social Perspective, people living with HIV are in constant threat of becoming a target of people who do not understand what the disease is about, and that it is a part of a global epidemic caused by people’s ignorance about lifestyle and the injustice of the division of resources in the world. We might think the world is large, but if we put things in a wider perspective, the world as we know it is quite small. We have to recognise that things are connected in a way we have difficulties to understand. The environmental movement has made it possible to widen the perspectives, and maybe there are some connections that we need to make with them to, in a better way, take benefit from the engagement of other people? Again the problem is still that this disease is so strongly connected to one of the most powerful drives in the human being; our sexuality! It is more “clean” to talk about a “dirty” climate. Why?
This perspective also concerns a psychological level involving relatives, who are also affected by the disease, even though they do not carry the infection in person. Partners, relatives and friends suffer from the disease together with the ones that have contracted HIV, and wonder what will happen with their loved ones. They are also depending on the situation in terms of stigma in the society; they may be exposed to other people's fear and anger. Further, relatives who choose to take a position in favour of the HIV positive persons are taking a risk of becoming affected by the stigma many HIV positives experience. The perception of the disease is usually justified by the national policies, and characterises the stigma that is allowed to exist in a country. Therefore it is unfortunate that people living with HIV in some countries are given a “pension”, i.e. financial support for not working, and sends the signal to all other inhabitants that HIV positive people cannot or should not work. Even if the intention is “good”, I totally resent this and suggest a change of practice immediately. Even if people living with HIV or AIDS are victims of the global epidemic, we have to acknowledge the strong force that exists within every individual, and that everyone have the possibility to function, act and contribute to the society, just as anyone else. Sometimes people can be turned into victims and get stuck in thinking they are just victims in any situation. It can become a part of their personality to take on the victim-role, to feel sorry for themselves, and neglect their possibility and responsibility to make the best out of their lives, like everyone else.