Seventeen-year-old Esther carries a secret wherever she goes. At home in Kampala, Uganda’s capital, the secret blows like a smokescreen between her and her older brother. With her closest friends at boarding school, two hours away, she holds it tight, fearing it might slip out.
If so, it might filter to other classmates who would point fingers and talk about her. Some, she says, would think she is cursed.
The secret, and the judgment she fears it could bring, might overwhelm her, derailing her plans to become a doctor, which would be far worse than her self-imposed silence and the distance she keeps from others.
Esther, who asked that only her first name be used, was born with HIV.
In many ways, she has already defied the odds. There was a time when infants such as Esther would not live into childhood, much less beyond it.
Worldwide, as recently as 2008, half of infants infected with HIV by their mothers during pregnancy, birth or breastfeeding were not expected to live past their second birthday, according to the Joint United Nations Programme on HIV and AIDS.
Today, as antiretroviral drugs keep HIV-positive children and youth healthier and extend lifespans throughout Africa, the first generation of teenagers born with HIV is looking at the likelihood of growing into adulthood.
Adolescence is a tumultuous time for any young person. But these youth also face the reality of living with a lifelong disease, the judgment and stigma that HIV still brings in Uganda, the pain of losing one or both parents and the realities of surviving as orphans.
MCC supports the work of a Ugandan partner, Mengo clinic, to bring together these youth to talk about their struggles and joys and to get advice from doctors and counselors.
Mengo clinic is the only place Esther knows of where she is free to talk about her status and where she can meet with other teenagers who have HIV.
One Saturday a month, more than 30 teenagers and young adults gather at the clinic, known formally as the Mengo Hospital Home Care and Counselling Clinic, to socialize, to discuss problems and to learn about HIV. MCC sponsors the gathering, as well as clubs at the same time for primary-school children with HIV and the children’s caregivers.
“I have learned self-confidence,” says 17-year-old Ramathan Ondoga. “I can speak without fear. I have learned that I am not the only sick one; there are many people. It has also helped me to realize this is not the end of the world. You can marry. You can be with a family. Being with HIV does not mean you are useless.”
Mengo clinic’s medical staff, as well as MCC-supported counselors who specialize in HIV, spend all morning and part of the afternoon with youth, preparing them for the decisions that accompany living with HIV.
At the clubs, young people can get answers to questions like these: Why should I keep taking medicine all the time? When do I tell a boyfriend or girlfriend that I have HIV and how? What do I do when my guardians treat me meanly because I am an orphan?
The biggest issue facing adolescents with HIV is the fear of rejection, says counselor Nicholas Asiimwe, echoing sentiments expressed by other staff members.
Commonly orphans, the adolescents often feel rejected by their parents’ deaths and by the relatives who, in many cases, pass them from place to place and treat them as less significant than their own children. In the worst situations, children with HIV are deprived of education or job skills because their guardians think they will die any day, says Dr. Edith Namulema, founder and director of the clinic.
So when it comes time to disclose their HIV status to a friend, let alone a boyfriend or girlfriend, adolescents are understandably afraid of being rejected. Some will try to hide their status, even if in doing so, they risk their health.
Esther, for instance, weary of classmates questioning her about her medicine, quit taking it for six months — a situation common for teenagers, Mengo clinic staff say.
Antiretroviral drugs must be taken twice a day, exactly 12 hours apart, says Dr. Namulema. If the teens are playing soccer, at a party or in class, they have to interrupt their activities to go take a pill. In Uganda, it is unusual for anyone to take medicine, so it attracts attention.
In addition, Esther, put on antiretroviral medications as a very young child, didn’t remember being sick with HIV or related illnesses. “I thought, there is no headache, no nothing. Why am I swallowing this? So I just stopped . . .”
Unfortunately, the hiatus brought Esther from Stage 1 of the disease, where she lived with no symptoms, to Stage 2, making her more susceptible to minor infection. She developed resistance to her medicine, so she is now on a second-line medication, the last course of treatment available to her in Uganda.
Young people in the club want the same things that their friends hope for: boyfriends and girlfriends, marriage and healthy children. Yet, because they have HIV, these youth face issues others don’t have to.
Dr. Margaret Mbabazi, who specializes in children and adolescents with HIV, stresses that having young people think through the consequences of their actions before they are sexually active helps prevent the spread of the disease. This, she says, is one of the few places where teenagers can get accurate information about sex, because the topic is seldom discussed at home.
Topics such as abstinence and self-control are stressed, as well as birth control and protection from sexually transmitted diseases. The club provides a space to talk about marriage for someone who is HIV-positive and methods available to prevent an HIV-positive mother from transmitting HIV to her child.
Counselors advise young adults to think about how they will share their status when they are considering marriage or a serious relationship. They tell the teens how Mengo works with couples, testing both people and helping them talk together about the results.
Mengo staff encourage teens to be open about their status in general, but to do that teens need the support of a group that, for some, has become like family.
They need to see their peers’ experiences and hear their stories. And they need to hear the message that their actions — taking medicine regularly, having regular blood counts to monitor the virus, eating healthy food and controlling opportunistic infections — really can maintain their health and hope for a long life.
For many, this is a far cry from how they felt when they first learned of the diagnosis.
“I thought to myself, should I kill myself or what?” 19-year-old Samuel Baguma remembers thinking when he learned at 16 that he had HIV.
No one else can tell how long he or she is going to live, regardless of HIV status, counselor Asiimwe tells the teens. He, himself, could be killed tomorrow in a motorcycle accident. “You take medications, you listen to your counselor, and you treat the infections that come along.”
Baguma has taken that message to heart. He is one of the senior members of the club and has done some post-high school training to become an HIV counselor. He dreams of somehow continuing his education.
“I think I can live more than 50 years,” he says. “When you are taking medicine well and you are not missing your appointments, you can live.”
Your gift of health supports people who are taking action to end AIDS and provides comfort to children and adults whose daily lives are affected by HIV.
Give through the envelope in the Christmas Giving supplement, mailed with this issue of A Common Place. You may also give online at mcc.org/christmas or by contacting your nearest MCC office (see page 2).
“Be strong and courageous . . . for the Lord your God is with you wherever you go.” — Joshua 1:9
Around the world, churches — including Uganda’s Anglican Church, which is affiliated with Mengo clinic — are reaching out with compassion and courage to care for those living with HIV and AIDS and to prevent the spread of the disease. As MCC supports their efforts, we also invite you to explore how you can take action against AIDS and help build a brighter future for the next generation. MCC’s AIDS Action Toolkit, available at resources.mcc.org or by contacting your nearest MCC office (see page 2), offers suggestions for action and prayer, adult and youth curriculum for Sunday schools and church groups, children’s resources, a DVD and more.