Living positively. It is shocking that even with the amount of HIV/Aids sensitization, stigma and discrimination are still rampant. At her lowest moment, boda boda riders and taxi operators often refused to take Susan Nanyonjo to hospital fearing she would collapse and die in transit. She had to walk all the way and back. But she survived and now tells the tale, writes Zuurah Karungi.
In 2001, Susan Nanyonjo, 43, discovered she was HIV-positive when she went for antenatal sessions and got an HIV test. When the results came back indicating that she was positive, she did not know what to do but she made up her mind not to disclose her status to her husband.
“I did not know how my husband would react so I only told my aunt. Unfortunately he died when I was nine months pregnant,” Nanyonjo recalls. The devastation and trauma was unbearable and it led to complications with the pregnancy, she had a C-section delivery.
For a long time, the mother of four lived with the secret, terrified that people would discover her status and shun her.
Eventually, she joined Makerere University, Johns Hopkins University as a study participant on one of the studies, which was a great relief for her because she got to interact with people in the same situation. She joined other women who were learning how to make handicrafts and different kinds of art skills.
In 2001, through a friend she learnt of Mama Papa, a Psychosocial Support group under MUJHU where she got more engaged with women living with HIV and participated in a variety of activities to better her life and get over the trauma.
“By the time I joined in 2001, Mama Papa had partnered with an organisation called Bead for Life who equipped us with many skills and after a year, we could make so many things including bracelets, necklaces, among other accessories,” she says adding that she had also saved Shs750,000 which she later transferred to a bank. She continues to save to fulfil her dream of buying a plot of land.
Nanyonjo had a major setback in 2014 when she acquired tuberculosis. She became ill and people around her thought she would not recover.
However, she was always positive and prayed to get a second lease on life.
“I was put on TB medication for two weeks but my body was not responsive. My eyes turned yellow, a medical condition called jaundice, and got worse, so they had to put me off medication for some time, I could hardly move or do anything on my own. I went back to depending on others for care where they would split a tablet into two and I took half. My family, especially my mother and children, were very supportive throughout,” she says.
She had also developed water in her lungs (a condition called Pleural Effusion) which made it hard for her to breathe or walk. The doctors had to insert a chest tube to drain it.
Sometimes even boda boda men would decline to take her to the hospital saying they feared that she would collapse and die before reaching their destination.
“This made me weaker and I felt discouraged. I continued seeking treatment and my support group encouraged not to consider the negative experience but focus on getting better,” Nanyonjo says she took this advice to heart and help her make it through the hard times.
Nanyonjo has made so many friends who have given her hope to move on despite her condition. She adds that she has also gained knowledge in making craft work such as baskets, bags, necklaces, carpets, tailoring, and knitting, among others. She says she has been able to earn what can pay her children’s school fees and save some more.
Sarah Nakatende (note real name), one of the founding members of Mama Papa group, notes that in 2005 when they had just joined MUJHU stigma was so high, people were discriminated against.
“I had rashes all over my body and people didn’t want to interact with me,” Nakatende recalls.
“When the group started, we had to think of an income generating activity that could keep us engaged. One of us had skills in making crafts and offered to teach the rest. From that day, we have been making handicrafts and selling to people who visit MUJHU who in turn get us local and international market,” she explains.
For every item sold, 10 per cent goes to the group savings and the rest is given to the person who makes it. They buy materials from St Balikuddembe Owino Market and other places in town.
She says this group has helped women keep focused and to live a positive healthy life. In case one has a challenge, they address it as a family and look for ways to help each other. Women have managed to pay school fees for their children, save some money and open up different businesses. She adds that they have jointly been able to fight stigma and discrimination and also members have been helped to adhere to their treatment.
Fear for disclosure
Most people fear to disclose their status because some are widows and may fail to get partners if they come out. Others do it in order to protect their children who could get traumatised by other people.
Some work in big offices and fear to be rejected and discriminated against by their workmates and others fear consequences of their family especially partners who may not want to disclose their status.
Every HIV-positive person should disclose their status to someone who can guide them or to talk to in case of a need. It is always good to talk to your family because they would never judge you. Nanyonjo advises single mothers who have been rejected by their husbands to stay strong and look after their children.
“Being HIV-positive is not a disability therefore you need to get up and work of your children and your survival. Also, look for groups with people of the same condition because through discussions and testimonies you get strong. You also get a chance to share ideas, with different people that will help you live better,” she adds.