Article published on issue 32 of African Woman (www.africanwomanmagazine.net)
Finding out that you are HIV-positive transforms your life, and often also the lives of people around you. But it does not have to be the death sentence it invariably was in the first days after the virus was identified.
by Claudia Giampietri
When she heard that she was HIV positive, Maria Assumpta Nankya was convinced that she was about to die and was waiting passively for that moment. “But time was passing and I wasn’t dying. Then, I realised that I was not going to pass away any time soon.”
Maria, an HIV-positive mother of two, discovered that she was HIV positive accidentally. “I contracted malaria and my best friend insisted that I go to the hospital and test for HIV. I followed my friend’s advice willingly but the result came as a great shock: I did not expect to be positive. I remember I was terrified and left the hospital as soon as the doctor told me the result, without waiting for counselling. Once back home, I started selling my property, packed my stuff and took my children to the village where my relatives live. I left my husband when I discovered I was HIV positive. I did not have the courage to tell him.”
As time passed and she felt fine, Maria returned to the city, where the doctors prescribed antiretroviral drugs (ARVs). After three months, she developed an annoying rash which made her scratch frantically, and Maria decided to stop the treatment without consulting a doctor. “No matter where I was or what I was doing, I had to scratch! It was unbearable, so I stopped taking medicine.” Some time later, community workers from a clinic heard about Maria from other patients, and visited her. “They came and asked me whether I was taking the treatment and I lied to them, hiding the drugs in the cupboard.”
Maria was afraid of what her neighbours would say if they found out that she was HIV positive, so she did not tell anyone, not even her boyfriend. “I was afraid I’d be rejected if I confessed to being HIV positive, so I hid the truth. Then I realised that I was behaving irresponsibly and one day I disclosed my status to my boyfriend and asked him to test. Fortunately he was negative, but he left me.”
By the time Maria started the treatment again, she had managed to overcome her fear of stigma, thanks to the help she received from the clinic, where she was given the opportunity to receive training to become a community worker. She now works for Kawempe Home Care, an HIV/AIDS clinic in Kampala. She cares for the clients of the clinic who live in her area: “My duties consist in making sure that the patients take their drugs by checking on them weekly, telling people about HIV/AIDS as well as alerting the doctor of the clinic, Dr Samuel Guma, when he needs to do home visits.”
“My work is to tell people to take drugs and to educate the community about the virus in order to fight stigma. I lied about my status for a long time, until I started asking myself: ‘How could I tell people to take drugs when I myself am not doing it?’ I am immensely grateful to the doctor and colleagues I work with because, by giving me the chance to help people affected by this disease, they also made me understand the importance of taking drugs and caring for myself.” From waiting passively for her death and fearing stigmatisation, Maria has learnt to be responsible for her own life, on which her two children depend completely.
THE COUNSELING THAT CHANGES LIVES
“Discovering to be HIV positive is shocking, – says Alicitidia Tusime, a 26-years-old counsellor at the clinic Kawempe Home Care in Kampala – thus, pre and post-test counseling are two fundamental moments that can help the person to accept the diagnosis.”
“Before the test, the counsellor assesses the risk factors that may have been exposed a person to HIV. Once the test is done, we try to help people accept the result.” Alicitidia says that the secret to live positively with HIV/AIDS starts with the acceptance of the diagnosis and includes a healthy life and planning for the future.
“I believe that counselors can improve lives. Many patients I counseled came back to me and said: ‘If it was not for you I wouldn’t be taking drugs and would be dead by now.’ Thanks to the counseling, HIV/AIDS patients pick up the lost hope and find their way to get along with their life.”
POOR SUFFER MORE
Coping with the challenges of HIV infection are even greater for people who were struggling to survive even without the additional burden of illness. When HIV/AIDS enters into a household, it can lead to a dramatic increase in poverty. In the first place, the virus deprives families of the income earners. As one parent dies, and then another, the children are left in the care of grandparents or family members, who were struggling to make ends meet themselves. In extreme cases, children have to fend for themselves.
A study in South Africa carried out by the Africa Centre for Health and Population Studies found that already poor households coping with members who are sick from HIV or AIDS reduce spending on necessities: almost half of households reported sometimes having insufficient food. Another consequence of AIDS in poorer families is that children – especially girls – are removed from school. School uniforms, fees and transport become unaffordable, and caring for the sick family member, and also trying to earn some money, becomes the children’s full time activity.
I joined Maria Assumpta on one of her home visits, to Jeff and Ruth Sentan.* Jeff is 15; his father died of AIDS-related complications when Jeff was 10. He lives with his mother Ruth, who is HIV positive. Jeff cannot go to school: since the death of his father, he has become the family’s breadwinner and he has to provide for his desperately thin and sick mother. They are squatters and live in a big, empty house still under construction north of Kampala. “The house does not belong to us,” explains Jeff, who sits on a mat close to his mother in the darkness of their room. “The owner didn’t have the money to finish the house and we are living in here without knowing when and if we will have to leave.”
Every morning after breakfast Jeff leaves his mother to go to the market, where he watches people buying and selling, and he waits while leaning against a wall. He waits for a small truck that comes to the market every day, filled with goods. Jeff has an agreement with the driver, who lets him take the leftovers once most of the food is sold. “There is not much left, maybe some bread, cabbage, salad, or eggs if it’s my lucky day,” Jeff says. Ruth is very proud of having such a loving and caring sun, but she also feels sorry because she is unable to send him to school. “My husband fell sick,” Ruth recounts. “He refused to test for HIV. When I tested I discovered I was positive, and only then my husband confessed that he had had affairs with other women. I was furious with him, not only because he had been unfaithful, but because he had infected me.”
That same year Ruth’s husband died and she started working to provide for her child: “I was doing laundry for other people to selling cassava chips on the streets. But I became so thin and weak that the owner of the shop sent me away, saying that nobody would come to buy from me as I looked unhealthy. People stopped giving me their clothes to wash and I ended up jobless.” Without enough money for rent, Ruth and Jeff left the house where they used to live and became squatters whose only possessions are two mats, a couple of pots and few pieces of clothes.
Ruth had become weaker and was bedridden by the time Maria reported her case to the doctor of the clinic. Ruth has started taking ARV medication, but she has not recoved sufficient physical strength to work, and her survival depends entirely on her son. “Being poor in the city is different to being poor in the country,” Jeff says, referring to his grandparents who live in a remote village. “In the village you can grow your own food and you can build a small house. In the city we cannot have a garden because we do not own the land. Everything is more expensive and poor people have a very hard time.”
Jeff, who speaks with the voice of a young boy and has the look of an old man, confesses that he wishes he could have continued studying. “I fear that the only thing I can do is wait for my turn to collect the leftovers. As soon as my mother gets better and no longer needs daily assistance, I will look for a job, so that I will be able to buy what I am now forced to beg for.”
After Maria Assumpta has asked Ruth a few questions concerning her health and has checked whether she is taking the drugs properly, we leave mother and son in the house, and start the walk back to the main road.
IGNORANCE IS DEADLY
In Sub-Saharan Africa, unprotected sex is the main cause of HIV transmission. Women are at higher risk as they are, biologically, more susceptible to infection from heterosexual intercourse than men are. (According to Global Health Report, the female genital tract offers a greater exposed surface area than that of males, and therefore women are exposed to greater risk of infection with every exposure.) Besides, women are seldom able to negotiate condom use, are more often subjected to forced sex.
Fear of rejection and stigma often holds people back from revealing their HIV status. This fear is believed to be the main reason why people are reluctant to be tested, to take antiretroviral drugs or disclose their HIV status to lovers, family or friends. If you have unprotected sex without disclosing your status to your lover, you are endangering his or her life by exposing him/her to HIV.
In Sub-Saharan Africa, 22 million people live with HIV, in other words, 67% of the total of 33 million. The epidemic varies significantly from country to country in both scale and scope.
According to UNAIDS data form 2008, among the East African countries the prevalence of HIV/AIDS is Uganda is comparatively smaller then in the neighbouring countries. Uganda is often held as the model in the campaign against HIV/AIDS. Nevertheless, nearly one million people currently live with HIV in Uganda. After dropping dramatically in the 1990s, adult national HIV prevalence in Uganda has stabilised at 5.4%. In Uganda the number of people infected is around 940 thousand, with 77 thousand deaths caused by AIDS. The highest HIV/AIDS prevalence rate is in the war-affected Northern Uganda, where 69% of all deaths are caused by AIDS-related diseases, three times more than the casualties due to military confrontations. It is estimated that more than half of all girls abducted by rebels were infected during captivity. Widespread displacement, poverty, prostitution, sexual abuse, unfaithfulness and the lack of a healthcare infrastructure are all factors responsible for the spread of the epidemic.
In Kenya, between 1.6 and 1.9 million people are HIV positive and more than one million have died of AIDS, leaving between 900,000 and 1,4 million AIDS orphans. In Tanzania about 1.4 million people are living with HIV, and about 110,000 have died of AIDS-related causes.
NOT THE END
Finding out that you or someone you love is HIV positive or has AIDS is never good news. It implies that your life – and the lives of those around you – will be transformed and won’t be the same again. Nevertheless, learning to live with AIDS is a process that leads the infected people to take control over their lives instead of giving up. Every day, more people find their ways of coping with AIDS. Living positively with HIV/AIDS means realising to be still alive and make the most of life.
In Gulu, 45-year-old widow Margaret Goloba’s* life changed dramatically when she was diagnosed. Margaret and her husband, both originally from Kitgum, both fell ill in 1995. Margaret contracted the virus from her husband who had been married before, to a woman who had been abducted by rebels in her teens. Margaret’s husband decided to ignore his status and even concealed it from his second wife, until she also became positive. Social stigma, mostly caused by ignorance and prejudice, became unbearable for the couple, and they decided to leave Kitgum and move to Gulu. When Margaret’s husband died, her brother started supporting her financially. “My brother helped us with money and food until he was shot dead during a clash between rebels and government troops.” After the death of her brother, Margaret feared that she would never manage to care for her children and herself. “There was no income, children stopped going to school and we didn’t have enough food.”
Things only started improving when Margaret went to the Comboni Samaritans, a non-governmental organisation founded by the Comboni missionaries.
“I found many other people living with AIDS, women like me who are alone and yet need to care for their children.” The Comboni give medical and psychosocial support to people with HIV/AIDS and Margaret was given a job as a tailor. “They treat me with dignity. I feel like loved and accepted.” Life is still far from perfect: being an HIV positive widow and mother of five in a war-affected area is challenging. “Every day there is a new problem to face, but I feel I gained control over my life and have learnt how to live positively with AIDS.”
* Names have been changed to protect their identity
