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My 23-year journey living with HIV/Aids

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Elvis Basudde Kyeyune showing the Noerina Kareeba “Breaking the silence” award given to him in recognition of his spirit to fight against stigmatisation and discrimination against those affected by HIV/Aids. PHOTO/RONNIE KIJJAMBU

BY ELVIS BASUDDE

As a journalist, I had been profiling people living with HIV and Aids, highlighting its devastating effects, oblivious to the fact that one day, I would be recounting the impact of the scourge upon myself. In 1998, I was the first to profile Rev Canon Gideon Byamugisha, an Anglican priest in Uganda who was the first prominent African religious leader to publicly declare his HIV-positive status.

I also wrote about popular pop singers such as Prince Jjuuko, Livingstone Kasozi, and Herbert Sekabembe, all of whom later succumbed to Aids. Their stories ran in 1995 and 1997, respectively. Five years later, in 2002, Aids caught up with me.

An imported virus

Towards the end of 2002, I started suspecting that I had contracted HIV, and I was terrified. A range of alarming symptoms began to manifest simultaneously. I was losing weight abnormally and rapidly, becoming increasingly weak and disabled. I developed haemorrhoids (piles), a rare infection that was one of the primary indicators of HIV. I also suffered from persistent hiccups that lasted for months.

The truth is, my HIV was "imported" to me in the 1980s while I was residing and teaching in Nairobi, Kenya. I unknowingly contracted the virus from my Ugandan-based high school sweetheart, whom I had left behind when I moved to Nairobi. 

Our paths accidentally crossed in the late 1980s on Biashara Street in Nairobi, and I was pleasantly surprised to meet her after many years. She had dropped out of school and become a businesswoman, while I had moved on with my education.

Naturally, we rekindled our relationship, and I spent time with her whenever she visited Nairobi. At that time, HIV was rampant in Uganda, though in Nairobi, we rarely heard about it. Unknown to me, Lucy had contracted HIV. I later learnt that she had died of Aids in Uganda.

Isolation

By the time I returned to Uganda in the early 1990s, I probably already had the virus, which took advantage of its incubation period (five to 10 years at the time). Eventually, I fell critically ill, absconding from my duties for months and isolating myself in my rented house in Namasuba, a Kampala suburb. I withdrew from the world, fearing stigma and ridicule due to my deteriorating appearance.

I quietly disappeared from work without informing anyone, not even my immediate supervisor. After staying away for over three months, I was shocked when I saw my company vehicle pulling up at my doorstep. Three colleagues stepped out and came straight to me.

“Elvis, take it easy. Do not panic. We are well-intentioned. Sorry about your sickness. Your editor asked us to take you to the hospital,” one of them said.

I was dumbfounded. It had never occurred to me that anyone at the office knew about my illness or my whereabouts. It later dawned on me that a close friend, who frequently visited me, must have informed my editor. Given the severe stigma at the time, I had turned into a skeleton and had chosen to hide.

But what particularly fascinated me was my editor’s compassion. Instead of reprimanding me for abandoning my duties, she offered me a company vehicle to take me to the hospital. That was truly exceptional and miraculous.

A fight for survival

At the Joint Clinical Research Centre in Mengo, Kampala, I was immediately admitted. My editor’s intervention was timely; I had full-blown Aids and was bedridden for six months. My CD4 cell count was 12 (a normal count ranging from 400-1600), meaning my immune system was almost non-existent. My weight had plummeted from 79kg to 35kg. I looked at my frail, emaciated body and barely recognised myself.

I had a brain scan, and the doctor told me my brain had shrunk. I became unconscious and slipped into a coma for three days. My sister, who was taking care of me, cried endlessly, fearing the worst.

Despite my devastation, I was more afraid of living with the truth than dying from the disease. It took me several months to come to terms with my reality. After being discharged, I was homebound and immobile for two consecutive, miserable, dark years. I was struck with severe paralysis and confined to a wheelchair.

At first, I was in shock. Then came anger, heartbreak, grief, surrender, and, finally, acceptance. I realised I had to bear witness, to fight back and not just wait to die. I decided to take action against HIV using what I knew best; the power of the pen.

Public disclosure and advocacy

Once I regained some strength after my near-death experience, I vowed to fight HIV using my journalistic expertise. My first resolution was to publicly disclose my HIV-positive status. Why did I disclose it? Altruism.

The epidemic was ravaging my community, and I needed to do something. During my six-month hospital stay, I witnessed many people dying when they could have been saved. I wanted to give HIV a face, especially among journalists and professionals who were living in denial. I wanted to show that with moral and spiritual support, good care, love, and strict adherence to ARVs, one could still lead a productive life.

Unlike others who disclosed their status under fictitious names and masked faces, I used my real name and unmasked my face. I wanted to be real, a practical, living example. After all, no one had forced me to disclose; it was a selfless decision.

Through my writings, I became a beacon of hope for many. My articles blended my personal experience with journalistic skills, inspiring many infected and affected individuals. One particular case was a Makerere University student who, after reading my story, called me and said: “Elvis, I read your story in the paper. Compared to what you went through, my struggle is nothing. I was contemplating ending my life, but you have inspired me. I have resolved to live. Thank you.”

Living positively

I survived because I accepted my status and refused to interpret it as a death sentence. I struck a deal with the virus, saying: “If you kill me, you die too, so let us coexist.” But the virus did not keep its part of the bargain, it made me ill. I fought back with ARVs, which have given me another lease on life.

I have since remarried, and through Prevention of Mother-to-Child Transmission, we have had two HIV-free children. Positive living is key, it delays the onset of Aids and allows one to lead a fulfilling life.

Today, 23 years since I stared death in the face, I  am thriving. I have conquered Aids and become an advocate for change. My life has only gotten better, and I stand as an example of resilience and hope.


ADVICE
Getting tested for HIV can be terrifying, but ignorance is worse. Knowing your status allows you to seek timely treatment. Those already infected
should not lose hope; medication adherence can ensure a productive life. Stop blaming yourself or others; focus on the present and the future.
To the young, practice safe sex, abstain, or use protection. Many
infected individuals look perfectly healthy. HIV is not a virus for
the immoral, it can affect anyone.
For those who stigmatise people living with HIV, I urge you to reconsider. How would you want to be treated if you found yourself in our shoes?