HIV Stigma, who is really responsible? All of Us!!! Here I was doing post-testing counselling for this young girl. She was worried that her boyfriend was going to infect her with HIV. He was sleeping with everything moving but she was insistent that she still wanted to be with him. I then told her that she had to use protection, but to be aware of the fact that it was not a full guarantee. There could come a time when she was infected. In any case we could not tell whether or not her boyfriend was infected unless we actually did test him. She told me that under no circumstances was she even going to mention testing with her boyfriend. He had once beaten her for talking about safe sex. Apparently he thought that anybody that talked about safe sex was a “ho”. Yes, I know…I gave up making sense of some of my “remote” clients long ago.
I then decided to close the session by talking about safe sex. I asked what seemed like an innocuous question at first glance. Basically, I wanted to check that the client had sufficient knowledge about preventing an HIV infection because I considered her to be a high risk. She went through all the known ways before dropping two bomb shells on me. According to her, you can get AIDS from eating food that was touched by someone who is infected. Then you can also get it if the infected person uses your toilet. I took a double take. This was a girl with a good degree in history and a job at a decent bank. It seemed incredible that in 2017, there were people who thought like that. I told my colleague that I was extending the session. We really needed to have a serious talk about HIV infection.
The story got me thinking about HIV stigma. In my line of work; I meet many people who are at some of the vulnerable points of their lives. For some, I give them a pleasant and unexpected surprise that they are HIV negative. For others, I am the bearer of the worst kind of news that they can ever imagine. I noticed that those who were positive tended to gain courage when I discussed the treatment options. The thing that frightens them most is dying alone and losing their looks. One begged me to keep the session short because she did not want people to think that she was positive. Apparently to her, the longer session was a clear indicator that someone was positive. I make a point of allocating similar timescales for my clients whether they are positive or negative. This is because I believe that those who are negative also need help to stay that way.
A Long Journey of Stigma
I am old enough to remember those horrendous days of the Gay Cancer. The behavior of some of my fellow Americans was absolutely appalling. Yes, we were all frightened by the spate of young gay men getting strange cancers and dying shortly afterwards. The body wastage and ulcers were absolutely appalling. It was heartbreaking to see a beautiful young person turning into an old man over the space of a few weeks. There were entire communities in LA who were wiped away. Then you had the government pretending that nothing was happening. Some went as far as saying that this was only just punishment for gay people for sinning so much. That was a very low point for us as Americans. Ironically, some of the people that were beastly to the sick ended up succumbing to the disease themselves. Coming out at the end of your life is harrowing and such a waste.
I can categorically state, that sympathetic attitudes in the general population only started taking root when it became clear that even straight white people were getting sick. That is when all the worthy charities flooded in and we finally got some funding for research. Before, HIV was treated like some kind of population control for our community. The cruelty was made worse by the fact that the people that were laughing at the community were once considered to be pillars of morality. I once saw a doctor actually use the sleeves of his shirt to open a door when entering a patient’s hospital. Yes, it was that bad. We were in a crisis and the innate selfishness of human beings was doing its job of making the havoc that much worse. I got to see some people for what they really were and I can tell you that I was not impressed at all.
As we learnt more about the disease, people became more accepting. We could see patients being visited. The advent of ARVs meant that the deaths were falling every year. It was rare for members of the public to see someone really in the throes of an infection. Many of our clients are so “normal” that I bet many would choose them over HIV negative people if they were given a choice without seeing the results. We are also getting discordant couples that opt to stay together rather than running away like they used to do. In fact; in those terrible times, even where the couple was concordantly HIV positive; they inevitably ended up splitting because of the destructive blame game that is a critical feature of this condition.
The Real Source of HIV Stigma
Although I can smugly look back at those ignorant people who treated HIV/AIDS patients badly, I have a much more nuanced view of the HIV stigma. The HIV stigma started with the patient themselves. They felt dirty and evil because someone had told them that only people who had dirty sex got this type of disease. We then had some of our most “caring” religious institutions preaching the most hateful things that you can image, all the while quoting from the Holy books in order to justify their personal prejudices. To their credit, some of these people saw the light and started getting involved in the fight against HIV/AIDS. I also noticed that the people within our professions were also getting a bit irritated with the patient. An unkind word here, a thrown file there, a banged door, some cutting comment, an exasperated sigh…we knew that there was fatigue.
Even I have to admit that I have often washed my hands when a very sick patient came to see me because I had this paranoia that there could be something that we do not know yet out there which could end up killing me. I know that it is irrational and perhaps bordering on the unprofessional but we went through some very frightening experience. It is a mystery to me why of all diseases that happen to human beings, HIV/AIDS is the one that attracts condemnation first before pity. It seems that the patient must first explain themselves and how they were infected before they can gain any level of understanding from the general public. Of course there are the nasties that are just rude regardless of the fact. They want the patient to know that they are to blame for their situation and that they are somehow dirty.
HIV/AIDS is a very isolating and depressing condition, partly because of the way in which it affects the brain and also the side effects of the medications that we currently administer. However, there is also another source of stress that is often overlooked as we treat patients. The silent and vocal condemnation from society can be one of the most mortifying experiences for the person that is affected by this condition. Meanwhile we can retreat back into our own comfort zones and praise fate for saving us from that terrible condition. HIV stigma is something that we must all own up to. Although this is a very serious and life threatening condition, it does not mean that the people affected lose their humanity.
Prejudice Rooted in Moralizing
I have a theory about the origins and manifestations of prejudice against HIV/AIDS patients. It all started with the moral aspect of the condition. Instead of focusing on the people that were suffering, we were more concerned about how they got the condition. Then you had the ridiculous dichotomy of good and bad AIDS. Those that got it through blood transfusions and as children were worthy of our sympathy. However, those that got it through sex had to be condemned for their naughtiness.
We behaved as if the desire for sexual contact was such a bad sin that it deserved the worst form of punishment. Nobody deserves HIV/AIDS, certainly not because they happen to have had a sexual relationship or encounter. Until we start to get rid of our prejudices, I will still be receiving clients that fear eating food that is touched by an HIV positive person. The irony of course is that many of the people that have the virus are living amongst us. They are healthy and beautiful. We will continue to accept them as long as we do not know about their HIV status. Thankfully I was able to counsel my client in time to save her from any further minute of unwarranted prejudice.