When Peter Gwengi’s wife died 21 years ago, she left behind three little girls, and he felt helpless. To add salt to the injury, there were rumours that she had died from “the virus” and he did not know how to deal with this either.
He traces back his journey to discovering his HIV status when DN2Parenting visits him at his home in Usenge, Bondo, Siaya County.
“She was seriously ill and admitted to hospital in Migori, but when there was no change, and her health deteriorating, I requested to move her to a better hospital. A nurse called me on the side and whispered, ‘why are you wasting your money treating her and she will die anyway? She is HIV positive.”
A call to the family doctor confirmed his worst fears, and an HIV test he bravely chose to take revealed a truth he was not ready to face: he was HIV-positive. His wife had hidden the fact from him for six years for fear of stigma and rejection.
For nine months after the death of his wife, he battled denial and did not disclose to any of his relatives, friends, not even his close family his status. He even refused to take his medication.
From denial to acceptance
He fought this for two years. He considers this as one of the most challenging periods in his life. It was one opportunistic infection after another, but he would not accept that he had the virus. He thought of committing suicide.
Since he was in and out of the hospital, his family and relatives guessed he could be infected given the rumour that the virus had killed the wife. He could not get out of his house or face his family or friends because of the stigma that came with the disease.
When the disease was taking a toll on him, Peter decided to be loyal to his virus for the sake of his children.
“I asked myself: If I die today for not taking my drugs, who am I going to leave my children with? How will life be? I could not get an answer, and the only solution l had then was to religiously take my drugs, prolong my life and to watch my beautiful girls grow into responsible human beings.”.
Having made that decision, he decided to go public about his status. He approached his employer and delivered the news. He got the support that he needed at work.
But there was a more significant hurdle to face: delivering the news to his children.
They were worried about their father’s health and wanted to know why he was ever on drugs.
“My children mattered a lot, and going public without informing them was definitely going to affect their performance at school. I spoke to one of our counsellors who advised me that I should gain the courage and face my children.”
Experts say that disclosing one’s HIV status is a process, not an event. Before you disclose, you need to ask yourself Why, When, how and to whom do you want to admit? Otherwise, it can have unfinished consequences.
When one is unable to disclose, there are always trained counsellors who offer what’s known as supportive disclosure.
“Given the ages of my children then, disclosures were so difficult. I cried every night whenever I thought of telling them, but I had to make my parenting easy; I was not free with them and would hide when taking my drugs.”
It took him three years to gather the courage to disclose to them his HIV status.
“I didn’t know how to do this. Remember, during that time, early 2000’s, there was little information on the condition, and everyone was left to use the little information available to survive.
“In late 2003, I had to deliver the damaging message.”
He left work, went back home, prepared food, set the table, called himself for a meeting, and narrated what he needed to tell them before finally revealing it to them.
“I bought chicken, rice, and sodas (Alvaro) which had just hit the market. I also bought wine for myself. I cooked the meal myself with their help. I wanted to make them as comfortable as I could.”
And after the meal, he went around and round preaching about HIV/Aids, but finally, he delivered the message.
“To my five and eight-year-old daughters then, HIV was nothing but three letters. I explained that HIV is a virus attacking the good cells in my body, and that I would start taking medication soon to reverse that process. Being open gave me relief knowing I was creating a new normal when speaking about HIV.”
The tricky part was explaining how the virus got into the body.
“Talking about sex with your children is awkward, more so when you are a father to daughters, there is a part of you that you would want to hide when it comes to their bodies, you sort of hope they figured it out on their own. Now, I was faced with explaining how I contracted HIV.”
He told his second and third born that he got the virus through sex with his partner and left it at that.
Within 30 minutes after disclosing his status, his 12-year-old daughter requested for his phone and began searching the internet for answers.
“My elder daughter was, however, aware that the virus came from the mother. I had to educate them on how HIV is transmitted and why it was important for one to protect oneself.”
They were devastated, and they all left save for the little one that remained tucked by her father’s side in the couch as she couldn’t figure out what the discussion was all about.
The older girls went crying into their rooms. Peter describes it as one of the most traumatising experiences in their lives.
“I spent the whole night tip-toeing into their rooms to check if they were still breathing. I did this after every 30 minutes till morning. I kept on asking myself whether I should have kept this information away from them.”
At school, the children were stigmatised, and parents asked their children to stay away from them as they would infect them with HIV.
“At first, I thought I should go to school and talk to the school administration about this or face my friends and tell them to stop stigmatisings my children or ignore them. I chose the latter.”
The condition was and is still highly stigmatised.
“What with children coming back home from school and asking you about whether it’s HIV that killed their mother and what AIDS is! As much as you have all the answers, it’s difficult to give it the same way, and it was a struggle.”
Every evening after work, he would ask them how it went at school. He would encourage them and tell them he was HIV positive but did not have AIDS and that he would live to see them through school and beyond.
How he made it work
“I made it my work to be talking to them individually and decided what information to give which child about HIV. Every child is different, and every parent is different, so there isn’t necessarily a ‘right way to tell your child that they, and/or you have HIV.”
His eldest daughter underwent counselling to help her accept her father’s HIV status.
Given that the rest were still young, they were given information that they could understand that having the disease is not the end of the world and one can stay for many years with the virus.
“My most hurtful moment was when they treated me as a sick person and would want to be giving me food in a specific bowl, and our interactions also changed.”
For months, he spent time with his children, just highlighting how important it was for them to accept that he had the virus; this would relieve the tension between them and his children.
He spent a lot of time demystifying HIV to his children and is proud that today, they know that HIV-positive people need love and compassion, not stigma.
“Since we always have open discussions in our house, we joke a lot about my virus; my daughters would tease me that I need to take my lifetime drugs on time, to see them through till they get married, then we laugh, and I grab my pills.”
Peter maintains a well-balanced lifestyle, healthy diet, taking antiretroviral drugs on time, exercising, having adequate rest, and dropping bad habits such as excessive alcohol.
“HIV is a very jealous virus. If you are to take your drugs, for instance at 9 pm, and you skip, it will eventually notice that something is not right, and it will attack with several diseases until you adhere to the rules.”
Stress, he points out, is also dangerous and can undermine your immunity.
Together with one of her daughters, they drive a sensitisation campaign to promote positive living and acceptance of people living with HIV. Two of his children are now working with NGOs working on HIV/AIDS programs.
The Lake Victoria Initiative, which Peter started in 2008, targets schools, churches, and any other forum willing to give them an audience.
While Peter focuses on a “more mature” audience, her daughter, Sally Gwengi targets her peers, whom she can relate to better and whom she believes are more vulnerable to the disease.
Their talks mostly centre on abstinence, safe sex, managing stigma, and supporting relatives and friends with HIV.
They also train community members on Community Prevention with Positives (PwP) and provide mentorship and supportive supervision after training.
“We conduct HIV monitoring through home visits to assess treatment adherence; we use every opportunity we get to demystify the illness, which they understand too well.”