By Raphael Depallens, Aids-Hilfe Switzerland

It is important to note that this article is not about the purely personal decision of whether to speak about it or not, but rather about the opportunity to be able to speak. To this end, I would like to address the topic from three perspectives: history, individual, and context.

History

First of all, it is easy to notice that HIV, compared to other viruses, has had a bad reputation for a long time. Of course, I do not mean that a virus can be assigned a value or a place in any hierarchy.

In the 1980s, HIV was ignored and kept quiet. Then, it was often attributed to people with a supposedly excessive lifestyle – those who were marginalized, the "others." This judgmental and false perception led to stigmatization and invisibility. In the 1990s, in light of the many AIDS-related deaths, important and quick measures were taken, which often led to an increase in fear (see, for example, the comic «Jo») or to an overload of personal responsibility (such as the ubiquitous condom). However, I believe that fear is not an adequate prevention tool, and while the condom has undeniable advantages, it also had disadvantages that should have been considered. In the mid-1990s, with the advent of the first therapies, HIV fell out of focus, no longer being a widely discussed social topic, and nothing more was learned about living with HIV.

Today, a person with HIV under effective treatment does not transmit the virus, but it is hard to overcome the historical burden. The public still holds on to the past image of HIV, which is the fertile ground for stigmatization, rejection, and issues that, at best, diminish self-esteem, and at worst, harm mental health. In contrast, Covid is a virus that has received much more attention and rapid, sustained resources, which is why knowledge in the public is much higher: everyone knows how Covid is transmitted and even knows the variants of the virus. For HIV, on the other hand, it is not widely known what U=U (or N=N) means, and the wrong beliefs about transmission routes are still concerning.

Individual

Throughout life, each individual is shaped by various experiences. These experiences play an important role in developing the ability to talk about oneself and life with HIV. Sometimes, the fear of speaking is linked to complex life experiences or similar reports from others. Some people find it easy or almost natural to speak confidently; for others, it is less obvious. Furthermore, one must realize how complex it can be to explain life with HIV, for example:

• communicating the non-transmissibility of HIV under effective treatment in a clear and correct way,
• explaining the challenges of living with HIV,
• reassuring that HIV will not cause death,
• addressing the mode of transmission (and thus substance use and sexual behavior, i.e., intimate aspects).

Context

This element plays an essential role, even though it is undoubtedly intertwined with the two already mentioned elements (history and individual). Context provides the opportunity and the stimuli to speak and can offer very concrete possibilities to feel confident enough to address one's life with HIV. In general, we all know numerous examples of situations in which context (surrounding people, social ties, etc.) facilitated the exchange of more personal information.

Moreover, it should be considered that living with HIV often meets with relatively little empathy, while other diseases provoke much more emotional involvement.

A supportive environment, one that approaches a person with HIV positively and attentively, is relatively important for that person to be able to speak about themselves and lead a fulfilling life. The lack of information and knowledge about HIV, as well as myths and prejudices, kills – slowly, but kills! In my view, context is the key element in overcoming silence.

Conclusion

It is therefore crucial not to place the responsibility on the person with HIV to decide whether they want to speak or remain silent, as this depends heavily on the situational and historical context. I have often heard people use phrases like "having the courage to speak" or "daring to speak," which is misleading because this step cannot be solely the "responsibility" of the individual; other