TWSC Submission: Growing up Under the Shame of a False Narrative

Imagine having to live twenty years of your life believing that you have a chronic illness, only for you to find out the truth at a clinic. The following story is about 31-year-old Sarah* from Uganda who grew up thinking she was HIV-positive because her family jumped to conclusions. Sarah faced a lot of discrimination and stigma from family members and almost lost her self-esteem in the process. This is her story…

Early years and losing both parents

My father died when I was eight months old. After my father passed away, my mother took me to her family but later brought me to my uncle, my father’s brother. Years later she also passed away. I think I was five or six when she passed away. I am not really sure because we were forbidden to talk about her by my uncle.

I was privileged to grow up in a family of love; everyone was my sister and brother. My uncle loved me and treated me like I was his own and I went to some of the best schools in Uganda. I can safely say I was more fortunate than some orphans who fail to go to school because of their situation. My uncle had so many kids from different mothers and we were many motherless children at his homestead. We were about 20 children, so I didn’t really feel the gap.

Growing up, I thought my uncle was my father and only got to know the truth when I was about nine years old. I was in Primary 3 (Grade 3) when my cousin (who I thought was my brother) insulted me [by] saying, “that’s why you are fatherless.” That is when I knew my uncle wasn’t my real father.

It wasn’t easy though after that. Despite the fact that I had grown up with them and knew them as my brothers and sisters, they sometimes discriminated [against] me. They knew I was not their biological sibling. Some of them, especially the older ones, felt I did not deserve to go to good schools or wear new clothes because it was their father’s money and some of his kids were brighter than me in school. Some felt I did not have the right to talk or put in my views when having a conversation.

At some point, Uncle also showed me that I was not his child. There were times when his wives would leave and we did not have anyone to call a mother. At such times, we would have to ask for fees directly from him. At one time, I asked, and he reminded me that I was not his child. It really hurt. He was so tough when it came to money.

Loneliness and solace in writing

I started writing in order to bury my sorrows. I handwrote a book, which I titled “The Cry of an Orphan.” Whenever I got annoyed or hurt, I would go to my room and cry, then start writing about it. In almost every chapter, I remember mentioning that it never goes away.

The cry of orphans is the same; it’s always about why this or that is happening. At a particular time when things are not going well, you wish you had a parent, especially a mother. There are some things you just need to tell a mother. You have things that stress you and [you] need to tell someone, and you really wish you had a mother or a brother or sister at least. I am older now, but it still hurts.

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Working hard to earn love

In everything, I am grateful that I was bright in school and smart when it came to day-to-day life. I am a fighter, and because of that, I always got fees. There was no way my uncle would refuse to pay fees for me when I was always in the top five or top 10 in class. His real children were a mixture of both: some were bright, but some were dull in school. I think his conscience forced him to pay my fees. Maybe he would ask himself why he would not pay my fees when I was actually more intelligent than some of his own children.

I was always on my best behaviour at home, did all household chores and was always respectful. I knew it was going to be me and me alone in this life. That is how I pulled through high school and university until graduation. I hold a degree in accounting and finance.

The HIV-positive narrative

I am not really sure what killed my parents, but the whole village thought they died of AIDS-related illnesses. I think I got a lot of sympathy from relatives because they assumed I would die early too. I was born at home not at the hospital.

I grew up knowing I was HIV-positive. When I turned 18, after my S6 (A-levels), my uncle sat me down and clearly told me the ‘truth.’  He told me that my parents had died with symptoms of HIV/AIDS and that I was also HIV-positive.

I was told about my status though no one had ever taken me for a hospital checkup. They assumed because of the symptoms my parents had upon death, I had contracted HIV as well since I was born at home. You can imagine the stigma that comes with that.

My family didn’t say much, but their actions said it all. When playing with others, they would always insult me using my health issues and parents’ death against me. It wasn’t easy, but I learnt to live with it.

Finding out the Truth

I remember when I was in my second year at university, I had stomach complications, and my uncle suggested that I go to the hospital so that I can start on antiretroviral treatment. He had already concluded my stomach pain was a symptom of HIV, and he even gave me money to go to the clinic.

Upon arrival, they had to take the HIV test first. During counselling, the nurse asked me what result I was expecting, I told her positive, obviously. I was now so used to talking openly about my ‘status.’ By that time, I was in a relationship with someone, and he already knew about it. The nurse asked me why I thought I was positive, and I went on to explain that both my parents had died from it.

She went on to educate me about how it works. Having HIV-positive parents doesn’t mean a child will be automatically positive and also the fact that I was born at home was not reason enough for me to be positive. She told me about how having a high CD4 count can result in a negative baby. All the same, I was still sure that I was HIV-positive. She took the test and told me that I was HIV-negative. I was in shock; she had to say it twice.

New Life

That was a turning point in my life. If I was living recklessly, if I didn’t care much about life, it was time to change. I found out I was HIV-negative after living 20 years of my life thinking I was positive. Right now, my perception on life has changed; the need to get better each day drives me. I am passionate about life and helping the less fortunate in whatever way I can. I know what it means to live without [so] I am down-to-earth.

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