Dorcas N. Chewe was devastated when she and her two sons were diagnosed with HIV, but today she refuses to be defined by her status and is raising a family of activists.
by Dorcas N. Chewe
My name is Dorcas N. Chewe. I am 44 years old, and I am HIV positive, as are my two sons.
Before I begin my story, let me say that living with HIV is not a laughing matter, nor is it something to boast about. But it is also important to know that living with HIV does not make one a lesser being, nor does it warrant the shame and stigma that often comes with it.
I share my story today because I know the importance of speaking out about the deadly virus that plagues my country of Zambia. I believe I am a living testimony to what is possible for those who are HIV+ in my community and in other communities around the world. My story is a troubling one, but it is not unique.
I married my husband in 1988, when the AIDS epidemic was just beginning to infiltrate my community. We knew nothing of the dangers of this disease, and it was many years before I was to learn of my status.
In 1989, I had my first child. When the boy was just six months old, I started to notice that his health was deteriorating. We spent most of our time in and out of hospital; it became our second home, as any time there was an outbreak of disease in my community, my child would become ill.
Four years later, I gave birth to a second son who was much healthier than his brother. Eventually, he too became ill. Still, no one—not even the doctors—suspected the AIDS virus.
The health of my boys caused strain on my marriage, as my spouse could not bear seeing both of his children in poor health. He continued to be absent from the home and the whole burden of looking after the children fell on me. Eventually, we divorced at his request and my children and I moved in with my relatives, who acted coldly towards us. Despite continuing health problems and an unstable living environment, both boys were quite intelligent and started school.
Eventually, health issues began to impact my older boy’s schooling. I wish I could say I encouraged him to get tested, but it was my son who braced himself and told me he was going for Voluntary Counseling and Testing (VCT). I was resistant to the idea and told him he was too young; yet, he insisted. He tested HIV+ at age 13. It was 2002, and Zambia had just declared AIDS an emergency crisis.
Upon learning the news, my eyes filled with tears, but I managed to fight them back. I assured him that I had already done my test and was positive too, but I was lying to ease the tension. I was scared to know my own status, though deep down I knew that I must have been the one who transmitted the disease to my child at birth.
My son’s response has haunted me to this day. "Mum, do you think I deserve to be HIV+?" he asked. "Why has God allowed this to happen to me? You made a choice for me to have this disease—why didn’t you give me a choice to contract the virus on my own?"
I almost lost my mind with guilt. To this day, I can’t shake it.
Learning of my eldest son’s status meant that we as a family had to strategize. I finally took a test, which was of course positive. We sat down as a family and decided to test my youngest son as well. At age 11, he tested positive as well.
I was heartbroken; I was devastated. I now had three cases of HIV to take care of. I lived in fear that I would lose both my children, either to the illness or to suicide.
When I informed the father of my children of our statuses, he was not surprised. He lived a risky life style with multiple partners, as many men in Zambia do, and it is my belief that he is responsible for infecting me. I know now that I infected my children, as PMTCT (Prevention of Mother-To-Child Transmission) treatment was not available to us in the late 1980s.
Eventually, I began to pick up the pieces with the help of God’s grace. I had no choice but to be strong for my boys. I was a single mother with HIV, raising two boys who were also infected. It was too risky to succumb to negative thoughts and depression. We adhered to our treatment plans and picked up the pieces—sometimes, we even laughed about our situation.
Since learning of our statuses, I have become a leader in my community. As a family, we came out on national television to inform people that even if you are positive, you can live a productive and happy life. I spoke to the people of Zambia about the risks of mother to child transmission, and reminded pregnant women to get tested, know their HIV status, and avail themselves of PMTCT treatments so that they won’t transmit the virus to their children, as I did.
I have also imparted a sense of resilience and responsibility to my children. Today, my older son is engaged in HIV/AIDS sensitization. He works with a local clinic and has encouraged many youths and adults to go for VCT. He is also involved in a program to encourage young boys to become circumcised, as circumcision is a key way to curb the spread of this terrible disease.
On my part, I have made my status known and now many people come to me for counseling. Physicians come to me for advice and information. I help women in my community navigate their statuses, and I continue to speak out in the hopes of educating people about what it means to live an HIV+ life.
My journey has not been an easy one, and health challenges still impact us daily. Last year, my son was in a coma for two weeks when he had Tuberculosis and Meningitis. Thanks to the TB drugs, he recovered—though he lost his memory and has some difficulty with speech. His brother is doing well, and never forgets to take his anti-retroviral drugs to school.
I want the world to know that we are a happy family despite our statuses. Yes, there is stigma. Yes, there are challenges. But we are living with this disease; we are adhering to treatment; we go for regular check-ups; we trust in God; and we are living our lives.
We are hopeful that one day there will be a cure for this disease that has overtaken my family and my country. Until then, we have committed to not letting HIV rule our lives.
This story was produced in collaboration with the International Reporting Project and World Pulse. In July 2013, Managing Editor Corine Milano traveled to Zambia as an IRP Fellow to meet with experts on global health issues; go on site visits to some of this country’s most successful projects; and to work with World Pulse community members to tell their stories about global health in their country