Hard Reality: My struggle with a disease of our time

Author: Jean Jordan Opileni. 

What you need to know:

  • I have come to realise that people do not die of HIV/Aids, but rather trauma, living in denial, stigma and untreated opportunistic infection.

Today is World Aids Day whose global theme is “End inequalities. End Aids”. It’s the basis for me to share my story publicly for the first time in my entire 23-year life.  

Home was, and is always, a place I want(ed) to be, surrounded by a wonderful mother, a courageous father and loving siblings. As a child, I was jolly, playful and humorous.

Hailing from Arua, Poya and Seka were my favourite out-door games. I recall the days of being chased by my aunties around 6pm to go and take a bath. Later, at 8pm, I would be given some long tablets, either by my mum or other elderly relatives at home, to take. Every morning, at 8am, I took another set of the medication.

Yet, I never felt I was sick. Anyways, I was naïve and for a moment thought that I was on a daily medication simply because I was young and needed it as a nutrient to grow. In a way, more or less like food.

Therefore, it was not a big deal. All I did was to get a cup of water, receive the drugs, throw the tablets into my mouth and swallow them.

However, while in Primary 5, I became more inquisitive and began asking my mother why I was taking tablets every day. The anti-climax for me at that tender age was when a friend asked me the same question.

This otherwise innocuous question struck me like a thunderbolt for it made me realise that not every child was taking medication every day and there was something wrong with me. That night I confronted my mum for an answer. Instead, she just broke down and both her and myself began sobbing uncontrollably.

As emotions welled, all she could gather courage to say was: “I’m sorry, I never knew, I never intended this for you.”  I have never cried so helplessly like I did that evening. Neither do I recollect how I caught sleep.

A hard reality now hit me and changed my perspective of life. I became more introverted because this reality had dawned on me like a monster. At school, I could hear teachers talking about HIV/Aids. Each day I entered school, messages about the pandemic written on buildings/compound and educational stickers, such as “HIV kills”, which I never focused on before, turned omnipresent, poignant and torturous.

I lost hope and began to live in denial.  In Senior 3 and 4, I secretly abandoned taking anti-retroviral (ARV) drugs. To dupe family, I continued to ask for and receive supply replenishment, but quietly dumped each batch in the school latrine. I’d rejected my HIV-positive status and wanted to live ‘normally’ like other children, without medicines.  

Soon, I reaped what I sowed. I started falling sick repeatedly and developed resistance to the first line of ARV treatment. That same year, I was enrolled on intense counselling at Arua Regional Referral Hospital.

What made me gain comfort was finding my peers; agemates and people of similar background, living positively. With and from them, I could freely share and learn lived experiences with HIV/Aids.

My interactions with my peers was a better therapy. I began accepting the hard reality of my HIV-positive status and became hopeful about life again.

The repeat interactions with peers at Arua Regional Referral Hospital HIV Clinic, particularly during my Senior Six vacation, buoyed me to stop self-lamentation and pity. I gathered myself and turned to focus on a better future in which I had lost hope.

With faith in God, ARV compliance, a supportive family and HIV-positive peer-to-peer network, life is normal and promising. I finished writing my last undergraduate examinations at Makerere University last Friday.  

I have come to realise that people do not die of HIV/Aids, but rather trauma, living in denial, stigma and untreated opportunistic infection. Self-pity kills. Taking ARVs is my life and gives me assurance to face the world and future with hope of better dreams and opportunities.

Mr Jean  Jordan opileni  is an HIV/Aids peer mentor.


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