The impact of HIV stigma for people living with HIV is not something light. I know people with HIV who had chronic periods of depression and decided to stop taking their medications because they could not deal with the stigma; their deaths are a price too high to pay for HIV stigma.
Some years ago (2011), I wrote an article titled “The power of stigma and the power of love.” In my younger years (and naïve as well), I believed that love was all we needed to respond to HIV stigma. I was thinking more in the tolerance level, almost as it was a favour that people who are not living with HIV should do for us, those living with HIV.
It seemed to me that once people understood that HIV is not contagious but transmittable, meaning that you cannot get HIV like the flu, stigma would stop. Nowadays science tells us that any person with HIV who is taking their medication and has undetectable viral load (this means that the quantity of HIV replicas in blood is so small that it cannot be detected), then, that person can no longer transmit HIV. This strategy is called U=U meaning Undetectable=Untransmittable. We have more and more people with HIV in a U=U situation but that was not enough to eradicate stigma.
One year later (2012), I analysed the romantic implications of HIV stigma and how it might increase or decrease with intentional or unintended disclosure of HIV positive status in social media. As I was about to become a serodiscordant couple (one person in the relationship lives with HIV, the other does not), it was clear to me that my former fiancé had been impacted by stigma in social media, which was the cause for the end of our relationship.
There are different studies that show evidence of a reduction of HIV stigma after a process of education and information. However, the change is at a superficial level, the closer the relationship is (for example, marriage, sexual intercourse, sleeping with, eating a meal prepared by a person living with HIV or having a child with a person living with HIV), the higher the possibility to go backwards to the tolerance and distant attitudes. Tolerance is not a good place to be because it is not acceptance; it is passive aggressive tolerance, maybe because the laws and regulations force us to interact with stigmatized groups. We, people living with HIV, experience that tolerance as a collective message that says: “I tolerate your presence here, but I am not becoming your friend or sharing a meal with you.”
I wish I were wrong when saying that HIV stigma and other stigmas persist because we do not want to recognize the human dignity of the “other.” In our deep thoughts, it is fine if the other is less benefited, recognized, accepted and supported because that means we are better. What these attitudes mean? Do these mean we are evil by nature? One thing is to have stigma towards people with HIV because we lack the information and we are afraid of transmission. However, science solved that fear long ago and gave us the assurance that HIV is a virus that cannot survive in the surfaces, it needs living cells and that is why it is present only in some body fluids.
Therefore, I have to ask, why do we remain attached to our fears and ideas that fuel stigmas? Is it because of the “other” situations around HIV? Such as sex work, drug use, gender and sexual identities, our fear of talking about sexuality, disease, and death? Is it that people with HIV expose those ideas and thoughts that we fail to express openly? Changing our mindset is not expensive if we are willing to learn, if we are open to understand diversity and are ready to offer respect to all people.
With my experience living with HIV for 23 years, I can say, people with HIV need budgets, programs, medications, better health systems, and equal access. We need more information, equality and justice, removal of laws and regulations that criminalize people living with HIV and affected communities. We need political will; we need other frameworks apart from the biomedical and public health. We need support, spiritual accompaniment, and correct information. We need your willingness to listen and to change beyond tolerance and yes, we need love.
I am not talking about romantic love in this case; rather I talk about the fraternal love of a community. That is the love that expresses in respect, acceptance, and accompaniment. The love that makes a government invest in our lives, that does not close a door in the hospital and a love that listens and heals, a love that is translated in a supportive community.
For people of faith like me, love comes in two dimensions, one between God and yourself and the second, between you and your community. This is how the commandant “Love your neighbour as yourself” should be expressed in the HIV epidemic.
We have just passed Valentine’s Day (14 February) and the Zero Discrimination Day (1 March) is approaching; I truly invite you to love your neighbour as yourself, because all we need is love.