As 2020 comes to an end, a year turned upside down by a pandemic that has seen the deaths of 21,000 people in South Africa and 1.5 million worldwide, HIV comes to the end of its fourth decade of turning lives upside down around the world.
Nearly 33 million people have died of Aids-related illnesses throughout the world since 1981, at least 3 million of them in South Africa alone.
Yet as the promise of vaccines brings light to the end of the tunnel as far as stopping the Covid-19 pandemic goes, the Aids epidemic quietly marches on.
In 2019, 72,000 people in South Africa died of Aids-related illnesses. The disease is still very much with us, given that 200,000 people in South Africa were infected with HIV in that same year.
This is a problem that isn’t going away.
Powerful anti-retroviral medications save lives and dramatically reduce the chance of transmission, but they have not been the magic bullet many once thought they would be.
The solution to the Aids epidemic remains more complicated than provisioning tablets. Why? Because at the very centre of it all are people. And people, as we know, are complicated, contradictory and often not good at taking care of themselves. Nor do they always have the best interests of others at heart.
The Covid-19 pandemic has literally unmasked this human frailty, with millions of people around the world unwilling to put on a simple mask. Imagine the frustration of those of us working with Aids; decade after decade pleading with people to put on a condom.
There has always been a cure for the Aids pandemic, even in those early years of the 1980s. It is us. People. It involves admitting our frailties and learning to work with them. It involves learning to care about our own lives and the lives of others. It involves being honest with ourselves and with each other. And it involves an upgrade of how we think about and do love.
The solution to the Aids pandemic is not millions of people on solo journeys. Yet through continued judgement and stigma, people with HIV are still forced to hide – and those who want to get tested are still afraid someone will see them. Shame is a driver of the Aids pandemic, it drives people into deadly isolation.
The solution to Aids involves millions of people – those with HIV and those without it – joining together on the same journey, watching out for each other, caring, supporting and loving. There is truth to the African proverb: If you want to go fast, go alone. If you want to go far, go together. We need to go far.
What can we do?
We can understand that antiretroviral treatment stops the progression of HIV and makes transmission to another unlikely. Treatment is prevention.
The tablet fights the virus well. But the tablet does not fight the stigma, shame, hurt, betrayal, blame, self-blame and isolation that can accompany the virus. That is what makes the solo journey of HIV a short journey for too many.
What can we do? Walk with our friends and family members who have HIV. Break the silence in our own families and friendship circles that still isolate people with HIV.
Learn to listen and care from our hearts for those we are meant to love the most in ways that matter to them.
Experience shows that family conversations about HIV are far more difficult and much less likely to happen than conversations in school classrooms or community centres. But perhaps they are the most important. Learn how to love and support our friends and family members with HIV. In that spirit, we offer the following thoughts.
One of the most common questions people have is, what do you do after a friend or family member tells you that they have tested positive for HIV?
Too often, out of fear of upsetting a friend who has HIV, people find that they begin distancing themselves from that very same friend.
Put your own anxiety aside. Don’t let your worries get in the way of being a supportive person.
Tell them that you are there for them. That you love them. Ask them how they want you to talk about it – and support them.
It really is that simple.
Learn all you can about HIV and how to be a friend. The internet is full of information. And there are literally millions of people with HIV who will help you learn how to be a good friend to someone with HIV. These people are not hard to find. Go to your local clinic, tell them what you need and they will be happy to find you someone with HIV to learn from.
Don’t reduce anyone who has HIV to their disease. They are much more than that. Never say something like, “Oh, there goes the HIV guy.” That is mean and ignorant.
Create safe spaces where your friend or family member can feel supported and able to open up about the emotional and physical challenges to their lives. Blame, hostility, hate, rejection and abuse of people with HIV still exists. Don’t be part of it. Create an environment that is exactly the opposite.
How someone got HIV is none of your business. Your concern should only be in figuring out how you will offer them support, love and compassion.
You have no right to speak about someone else’s HIV status anywhere, unless that person has given you specific permission to do so and indicated with whom you may talk.
Related to the above, gossip kills. Literally. It creates atmospheres of fear where people are forced to hide. Don’t gossip about anyone who has HIV or who you think might have HIV.
You have no right to judge, blame or shame anyone who has HIV. Everyone has their own road to travel, even you.
There is no such thing as an ‘Aids joke’. Never make one.
You do not need to be afraid of anyone with HIV. You cannot become infected with HIV simply by being physically or emotionally close to someone with HIV. It is transmitted through human blood, semen and breast milk. That’s it.
No question about HIV is a stupid question. This should be true for every question we have wherever we go. How can we get things right if we are afraid to ask because we fear someone will laugh at our question?
Sexual desire does not end with HIV infection. And sex does not need to end either. With the proper use of condoms and antiretroviral treatment, there is almost no chance of passing the infection to another.
The need and desire for love and companionship do not end with HIV infection either. People with HIV are still people. HIV is not some powerful switch that turns off our want to be held, to fall in love, to be loved or to have sex.
Falling in love when you have HIV can be complicated. Why? Because of the question, “When do I tell the person I want to get to know better that I have HIV?” There is no right answer for this question. But if you have a friend with HIV, it is something you can help them with.
Everyone needs a friend to talk to, not just people with HIV. Remember the African proverb, “Sorrow is like a precious treasure, shown only to friends.” Don’t think that just because your friend has HIV you cannot share your own sorrows as well. This is a part of friendship. To not share what burdens you, is to become a caretaker of your friend, and that will create distance between you.
People with HIV can live long, healthy lives like everyone else, if they manage their care and treatment. If they take their medications as prescribed and behave in ways that support their health. This includes eating well, sleeping well, exercising and really taking it easy on drinking alcohol and smoking cigarettes. This is another area where you can be a good support. Join your friend in an exercise programme. It will be good for you as well. Surprise him or her with a nice meal. Everyone loves that!
People with HIV can create families of their own and have partners and children who remain free of HIV. When following proper medical instructions, there is little risk of someone with HIV infecting their partner or giving birth to an HIV-positive baby.
Having HIV is hard and demanding work. Staying healthy requires daily antiretroviral medications and regular visits to the doctor for blood tests and medications. There are worries about stress and not sleeping well, fear of what others might say, eating well, exercising, not drinking too much or smoking, figuring out love and relationships. Imagine having all this stress on top of the stressful lives most people have. People with HIV who manage their disease successfully for years on end are extraordinary and usually have the support of good friends.
It really helps to have a friend or family member for support when taking antiretroviral (ARV) medications. These medications must be taken at the same time every day. It is tiring to have to take any medication every day for the rest of your life, not just HIV medications. Taking HIV medications can also be complicated by emotions: each tablet a reminder of how one got HIV in the first place and the usually harsh feelings that went along with that, like sadness, shock, anger, betrayal, blame, self-blame and shame.
People with HIV are not victims. People living with HIV have asked the world for nearly 40 years not to call them victims, but many people continue to think of them in this way. Don’t be one of those people. To think this suggests you believe that people with HIV have no ability to control their own lives. This is clearly not true.
Your friend or family member with HIV may lose friends because of it. No one can control everyone’s reactions and behaviours. If this happens to your friend, remind them of the African proverb, “In good times friends know you and in bad times you know them.”
Stigma has forced people with HIV into silence and the shadows for almost 40 years. This is a painful legacy for anyone with HIV. As a friend, remember the African proverb, “Where there is love, there is no darkness.” You know what to do. Just continue to love.
Similar to other lifelong diseases, people with HIV can get tired of having to deal with their disease every day. These “down days” are when anyone needs a friend.
Discrimination against or stigma towards anyone with HIV should be confronted immediately if and when you see it. How else will it ever end? People can be very cruel and use the existence of HIV in another person’s life to mask their unhappiness with their own lives. Someone who intentionally strikes out with words, exclusion or physical violence to another person because of HIV is himself or herself broken.
You must understand that brokenness, but not allow it to be an excuse for unacceptable behaviour.
Having a friend or family member with HIV can help you grow and learn more about what it means to be a good friend, to care and to love.
“To be without a friend is to be poor indeed,” says the African proverb. “A friend is someone you share the path with.”
Our hope on this World Aids Day 2020 is that you share this path with your friends, family members and communities, and that we all join together on one common journey towards a world filled with greater love, compassion and grace.
If we can do this, we will certainly travel far. DM/MC
James Lees and Joachim Jacobs are with the HIV & Aids Programme, University of the Western Cape.