Couple live positively, overcome stigma

Nuusita Ashipala

Ongwediva-Learning that you are HIV positive can be a daunting prospect especially in an age when people with HIV still face stigma, discrimination and social ridicule from a society that tends to be highly judgemental.

But for Paulus Erastus and his wife Lusia Gideon, learning they were HIV positive – although initially shocking – was the cementing of a beautiful love story that led to nuptial vows eight years later.

They started courting in the 1980s, cohabited for 11 years before they married and have been living positively for the past 15 years.

Today, 57-year-old Gideon and 52-year-old Erastus are parents to three children and a grandson.
Determined to live healthy and positively, although unemployed, the two survive on money the husband makes from doing deliveries for people in the surroundings.

Gideon is a seamstress, tailoring clothes of all sorts of designs from their home at the New Reception informal settlement in Ongwediva.

The husband was not at home when New Era arrived at the house as he had left early for a morning delivery and only arrived later to join the interview.

Gideon, who is also usually up early, was keenly waiting in her pyjamas and had begun to relate their story when a man on a bicycle approached the house and before greeting asked his wife whether she had taken her ARVs.
Gideon, a while later during the interview, paused to take her medication and lamented that she often forgets to take it at a set time.

Erastus sat next to his wife and together they dwelled on their journey as a couple that now live positively with HIV.
They related that, since testing HIV positive in 2002, how and when they got infected is a topic that has never come up for discussion. “For us taking our antiretroviral (ARV) drugs and ensuring that we have food at home remain the most important thing,” said Gideon.

Like the tales of many HIV-positive people back in the day, when HIV was still a taboo, they too were ridiculed and called names and discriminated against.

“But sometimes we also discriminated against ourselves, because we always assumed people were staring at us and knew that we were HIV positive, especially when we used to collect our ARVs from the hospital pharmacy,” said Gideon.

But since the establishment of the Centre for Disease Control (CDC) clinic at the Oshakati Intermediate Hospital they now collect their ARVs monthly. Gideon said they discovered they were positive when their last daughter was born.

“After her birth she was often sick and in and out of hospital and one day the nurses advised us to have her tested for HIV.

“I did not suspect that I was positive so I did not object to have the baby being tested, but unfortunately the baby’s results came back positive. I was confused but I knew I had to get my husband and me tested together.”
She recalls how uncomfortable she felt to disclose the news about the daughter to the husband, but a day later the husband had a headache and needed to get treated.

“We always followed each other to wherever, so when we got to the hospital the nurses asked when the headache started and I just chipped in and told the nurse that it started when I told him that our daughter was HIV positive, and that is when we were advised to get tested and we also tested positive,” said Gideon.

Erastus said that while his wife went on ARV treatment immediately after they tested positive, he only started with the treatment two years later because his viral load was still low.

Erastus now takes one tablet twice daily yet his wife takes three tablets twice daily because she battled tuberculosis while on ARV treatment.

He said he has taken his medicine without defaulting since then and was inspired by seeing other people taking medicine growing stronger.

Gideon further related that her husband is up at least by five in the morning to do odd jobs for the people in the area, but before he goes out daily he ensures he has taken his ARVs and has had a meal and enough water.

“My husband doesn’t wait for anyone to give him food – when it’s time to go he fixes himself a quick meal before he goes and in most instances reminds me to take my medication because I often forget to take mine on time,” said Gideon.

Today they view HIV as any other disease.  But more so they see themselves as champions who have survived stigmatisation.

“One of the thrilling moments of being HIV positive is to be called to address a crowd and encourage other people who are struggling to cope with being HIV,” said Gideon.

“Our agony was short lived and today we boast of impacting other HIV-people positively and our home has become an interview centre for people from all walks of life who want to dip into our life journey of living positively.”
“Today I am free, I am no longer ashamed to talk about my status.  HIV is nothing to me and that is the spirit that this country needs in the fight towards an HIV-free generation,” added Gideon.

Disclosing children’s HIV to them
While it is equally daunting to disclose to a child that he or she was born HIV positive, Gideon said it is imperative for such children to know their status.

Having raised one of her own, she relates that sometimes they ask difficult questions regarding their status, yet she says that should not deter any parent from informing their children about the truth.

She instead encourages parents to take their children along every time they collect their treatment from the hospital because the hospital has supportive materials that prepare them until such a time they are deemed ready for their status to be disclosed.

“My daughter also used to ask when she will be healed from taking these tablets and I had no answers for her. But I always noted her questions and gave them to health workers to answer when we collected our treatment and it worked,” said Gideon.

She said it is quite a process, especially for a child, because the treatment has side effects, including being dizzy, moody, and such a child needs to understand the sudden change in the body.

Fighting HIV as a couple
For many other couples testing positive is the start of arguments and disagreements in their homes.
Erastus said that while he does not know the core of such fights, it is vital to have peace and create a loving home for a family when battling HIV.

Asked why he decided to marry his long-term girlfriend knowing they were HIV positive, Erastus said she had been there for him long before they discovered they were infected.
“Leaving was never a choice. And HIV is not a shameful thing anymore. It was back in the day but it is now an ailment like any other,” said Erastus.

Gideon encouraged HIV-positive people not to use the illness as a setback to achieve greater things in life.
She reckons the treatment has side effects, but behind those side effects is a chance to live.
She discouraged people to use HIV as an excuse not to find work, especially those who do not have formal jobs.
“If you use HIV as a chance to sleep, that is pure laziness. We are aware of the consequences of taking treatment, but we should fight to ensure that we always have food in order to take our treatment unhindered,” said Gideon.
The two say that dealing with being HIV positive can be easier when you surround yourself with people who are also HIV positive.

They encouraged couples and their children to join support groups – because it is there where they can learn better how to live with themselves and others.

“Even when you are struggling to tell the family – when you join a support group you will get ideas of how other people did it and you realise it is not as difficult as it seems. Of course stigma will be there but it fades with time,” said Gideon.

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