By Noah Junior Tiago
When telling my story, I always start from the beginning. I am an orphan who lost both parents due to HIV/AIDS. My Mother left both my brother (who is HIV negative) and me. After my father passed away in 2005, my brother and I were taken to our grandmother. But by then, she was very old and couldn’t help herself. She couldn’t manage the monthly medication refills and could not afford food. Due to this, my aunt decided that she should look after me and so I was adopted by her. My aunt was a widow who had lost her husband and therefore she lived alone. She was a hard-working woman that ran rental houses. My aunt’s brother, my uncle, also lived in one of these houses with his wife.
Due to now having moved areas, I had to be transferred from my original healthcare facility to TASO Mbarara. This healthcare facility was great, and I easily received my medication refills every month. It was also only a few kilometers from where my aunt’s home so I would pay less money when traveling and sometimes I would even walk there. Back then, I was still young and therefore my uncle’s wife accompanied me whenever I collected my monthly refills. One day on a sunny Wednesday, I arrived at TASO and was told that I was HIV positive. I was horrified and in that moment, I replayed the terrible statements that my primary school had said about the virus; AIDS HAS NO CURE, YOU WILL DIE. I remember my uncle’s wife telling me that I would die if I didn’t take my medicine. After I arrived home and told my aunt about my status, she also said a similar thing to my uncle’s wife.
Due to only being 13 years old, I didn’t know how to use the medication. I had to take them every day at home and often I was alone when taking the medication. I felt isolated – I hated myself and everyone around me. Whenever I took my ARVs, I would remember what people said to me, “take your meds otherwise you’ll die”. I would then take them quickly so that I could get better faster. I wanted to take more because I thought this would speed up the process. I eventually took double the dose. This caused horrible side effects, such as loss of appetite, fever, dizziness, and vomiting.
One day, after arriving at TASO, my counselor noticed something wasn’t right and so she asked my uncle’s wife what was wrong with me. My uncle’s wife could not tell the counselor what happened to me, so the counselor gently pulled me aside and asked me directly. I remained silent and she asked again. Finally, I managed to find the words to tell her, “I take my drugs alone without any supervision. My aunt tells me I will die if I don’t take them. I feel like I should die or live alone in this life.” This was a ground-breaking moment for me because I realized how alone I felt.
After arriving home, my aunt reassured me that now she would be the one who would supervise me while I took my ARVs. After this, we became very close and today, I still feel as if I am her biological son. I always felt supported by her and found she was often there for me by providing me with things that I needed. However, as I grew older, things became more difficult. When I reached secondary school, I lived in the boarding section of the school. Now that I was an adolescent, I started seeing girls and became responsible for my actions. I would go to TASO alone to receive my ARVs refills and I made decisions for myself, even if they were reckless ones.
Due to staying in the boarding house section, I was forced to take my ARVs in the school dormitory hall. This made me anxious and afraid of judgment from my peers. I was also a school prefect and so I didn’t want people knowing about my status in fear that it would tarnish my popularity. Due to this fear, I would sometimes skip days of taking my medication, and taking the ARVs strictly depended on whether people would see.
One day, I got a call from my aunt asking me to come home because she had something important to tell me. After arriving home, my aunt said, “You are now older and can take care of yourself. The fact that your parents died from HIV doesn’t mean that you have to die. You can still live for many years because nowadays, PLHIV lives the same amount of time as an HIV negative person”. I didn’t understand why she was telling me this until she added, “Someone at TASO has told me you are not taking your ARVs at school. TASO is worried and they want to see you.”
The following day at TASO, I was told that my viral load was too high. I was so surprised and shocked too. Despite this, it still didn’t make me understand the importance of adherence and so I still avoided taking my medication. My friends were also beginning to suspect that I was taking something. One evening, my friend saw me opening the bottle of ARVs and asked me what they were. I didn’t know what to say in embarrassment and from then on, I stopped taking them completely. Luckily, I eventually told my counselor this who then told my aunt.
Once my aunt and counselor knew about my fears, things became better and I also started receiving support from my school headmaster. Eventually, I became open about my status and despite my previous fear, my friends were actually supportive. I became a youth peer leader who taught my fellow peers about HIV. In 2017, I was tested with a low count and since then, I have never been tested with a high count. I am now undetectable. This achievement had a lot to do with the support I received from those around me.
Due to my leadership skills, the TASO community allowed me to take part in the trainers for the TOT which was held by Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). Thereafter, I was recognized as an Ariel Youth Ambassador. In 2019, I took part in the Ambassadors Reunion and I was able to tell my story to many PLHIV. I also heard their stories which made me feel I wasn’t alone. I want to give thanks to EGPAF for giving me a platform where I could tell my story to many other PLHIV in different areas. Working as an Ariel Ambassador is honestly the greatest achievement for me because it gives me hope that we will end HIV/AIDS.
Looking back on my story, I realize my resilience came from within but also from those around me, especially my aunt. I will always be grateful to her for teaching me to be strong in the face of adversity. She and many others showed me that HIV doesn’t determine my potential and that I should always respect myself. And when I started to believe this, I slowly began to help myself; resilience comes from within and I am especially grateful to myself for realizing this.