I can’t believe my luck. Of all the places I could have gone to, I ended up in Zimbabwe, working with adolescents with HIV/AIDS. Fate?
Before leaving Sweden, I was very unsure if this was the right decision. I had just discovered what I wanted to do with my life, and the life style of MSF (jumping from country to country, working in emergency settings, dealing with adrenaline and stress) wasn’t part of it. I wanted to find inner peace and become a psychotherapist.
While waiting for my mission, I worked at a rural hospital in Northern Sweden and I had started to book some of my patients at the end of the day, the ones that I felt needed some extra time. It led to some very intense meetings that moved me deeply, and gave me the sensation that this was right; this was where I belonged. At the same time I had started attending the Buddhist centre in Copenhagen where they offer a mixture of therapy, mindfulness and Buddhism. Also this had a deep impact on me and strengthened me in the sense that I was on the right track.
And then I ended up in Zimbabwe, being assigned as the focal person for paediatric HIV at an HIV clinic with 960 patients under twenty. It may sound a lot, but as the nurses are the ones who have most of the patient contact, I initially felt a bit redundant. I read the blogs of friends that had gone to South Sudan, saving lives on daily basis, and felt that I had been very unlucky.
But then I started to engage in the support group for HIV positive youths. I’ve seldom met a group of people that is more exposed, with a disease that is completely preventable (with appropriate treatment and information almost no mothers transmit HIV to their babies), being exposed to orphanhood, family as well as community stigma, and a sometimes severely crippling disease (many of them are short, thin, with disfiguring skin diseases).
And then comes puberty, dreams of a partner, children, family. They might enter into a relationship, not knowing how, when and if they should disclose, always risking rejection. Today we had a focus group discussion and one nineteen-year-old girl told us that she had had a boyfriend, whom she had indirectly disclosed to: “I asked him if he would leave a girl if she was HIV positive, and he said no. But he didn’t want me to take my pills, so I stopped taking them. I started losing weight, growing thinner and thinner. In the end I got sick and realised I had to choose between life and love. I chose life.”
Disclosure in general is a tricky issue. When people find out, either through an accident, direct disclosure or someone disclosing for them, they lose all their friends, no one wants to share their food with them, no one wants to touch them.
“My friends were wondering why I kept taking pills. I didn’t know, and told them so. Then I went to a support group and found out by accident. I told all my friends and they all stopped playing with me. It was very painful.” (14-year old girl)
”I told my teacher about my status and he told everyone that they shouldn’t share food with me, touch me or come close to me. I was severely harassed and some even spread the rumour that I could infect them by bad will. In the end I had to switch schools.” (19-year old boy)
But the worst part was the discrimination they received at home.
“I heard my aunt complaining to a neighbour about me asking for too much food. The neighbour was saying that it was just a phase. I kept wondering about that, that it was a phase. It was as though she was waiting for me to die.” (20-year old boy)
Another said that at one point, his relatives were already preparing his grave.
“Children with HIV don’t live long,” is a wide spread conception, and sometimes the children feel like others are wishing for them to die. A thoughtless comment by a non-supportive relative can sometimes be enough to convince an adolescent to stop taking the medication. However, a statement of support can also turn things around.
“I had stopped taking my pills, and I was getting thinner and thinner. One of the nurses at the clinic talked to me. He said that he wanted to see me grow up and develop. That I had so much to give. Just having one person who cared made all the difference.” (24-year old girl)
A point that really shocked me was that many of the children described discrimination and bullying within the support group. Apparently, some children were inviting HIV negative friends who then spread the status of the other children in the community. Some other kids were physically abusing the others, sometimes threatening them to stop coming to the support group. In spite of this however, most described the support group as something very positive, providing them with a sense of hope and community.
Some also described amazing courage, taking discussions and fighting stigma while risking detection. Two 19 year old girls had been standing on their schoolyard with a t-shirt saying: “HIV is not transmitted by body contact.”
Several people had come up to them to discuss this. “But if you were to date a person and found out that he was HIV-positive, would you still marry him?” someone had asked them. When one of the girls said yes, he said: “You are dangerous. You must be infected. I will not talk to you anymore.”
There were so many life stories and I could feel how good it was for them to share with each other. Sadly, there are too few opportunities for that in the project. But hopefully we can change that. MSF wants to focus on kids and adolescents for 2015 and the project psychologist and I have been asked to make a proposal for how to develop the care. We’ve spent many hours making a very ambitious plan, which I’m not sure that we’ll be able to carry through, but I guess the little we can do will still be something.
In any case, I’m happy to work with the kids. They are totally cool.