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Tearful tales from Hiv victims: ‘Family members, friends spearheaded our stigmatisation’

By Esther Onyegbula

Stigmatisation is one of the major challenges persons living with immunodeficiency virus (HIV) face on daily basis in Nigeria. 

Photo by NigeriaHIVInfo.com

Most of them get stigmatised even by friends and family members.

Some lose their jobs just as others are evicted from where they live because of their HIV status.

In spite of the awareness and sensitisation campaigns carried out by government, non-governmental organisations and the clear provisions of the HIV/AIDS Anti-discrimination Act 2014 which make it illegal to discriminate against people based on their HIV status and also prohibit any employer, individual or organization from requiring a person to take HIV test before employment, very little has changed in terms of stigmatisation.

Unfortunately stigmatisation has led so many persons living with HIV into depression while others who can’t endure the shame have taken own lives.

No doubt stigmatization has continued because of lack of information and misconception.

‘I felt like killing myself’

When Chinwe Ike first tested positive to HIV in 2004, not only did she not believe her test result, she had to endure stigmatisation even in the hands of close friends and associates.

Chinwe told Sunday Vanguard: “My biggest challenge then was the stigma; it was too much for me. I trusted a friend who was a nurse and she was the only person to whom it was disclosed and was the one spreading the information, thus making life difficult for me with stigmatisation.

“I felt like killing myself. And whenever I walked on the street, people will be looking at me. Only a few persons who were well informed about the disease and who loved me came close to me.

“And to make matters worse, I was given quit notice by my landlady even though I wasn’t owing house rent. If I had the knowledge I have now, I would have sued her.

“But due to my ignorance, I left the rented apartment because the landlady and my co-tenants threatened to kill me. I also lost my job in the company where I worked as secretary/cashier at Alaba International market then.

“It was later I discovered that it was my friend who went to tell them that I am HIV positive. I had to leave the street and relocated to another area of Lagos.”

Recounting how she discovered her status 19 years ago, Chinwe narrated “I first tested positive to HIV in 2004. But I didn’t really know what aliment it was as health workers called it XYZ then. I had to run the test three different times in different laboratories to confirm my worst nightmare.

“And every single time, the result came out positive.   I was in a state of denial for three years without seeking for solution. Then I had my baby in 2006. When I was pregnant and sick, I had to go to hospital where I was admitted for one week.

“From there I was transferred to another hospital and I had three tests. Yet I didn’t believe it because I wasn’t leaving a wayward lifestyle.

“I don’t flirt and I didn’t even know what having girlfriend or boyfriend was all about. That is why I didn’t believe the test result when it came out.

“After I got well, I was discharged and I went home. After a while, I went into labour and I had to go to a private hospital. It was at that private hospital that they discovered I was HIV positive but the doctor did not disclose it to me”.

Also read: World AIDS Day: LAPO screens 100 artisans in Lagos

“He (doctor) asked me to bring a close relative. Unfortunately for me I brought my friend who I thought was a close friend. But instead of telling me what the doctor said, she went to the neighbourhood to tell everyone that I had HIV.

“And then the stigmatisation began from every angle. No one wanted to associate with me. Friends and family members deserted me. I lost my baby two months after I delivered.

“As of the time the baby (a girl) passed on, I hadn’t begun treatment. I wasn’t taking treatment then, so she developed cough and I think that’s what killed her.

“Meanwhile, I refused to seek solution because at one of the laboratories where I ran the test, the attendants who had misconception said that someone with HIV cannot give birth nor get married and there was not cure.

“I attempted to take my life as I believed that there was no need continuing to live with the virus. So with that impression, I refused to go to hospital and decided that if I would die, so be it.

“In fact, on one particular occasion, I had to take a knife to kill myself. It was my belief as a Christian that held me back. The thought that if I took my life I will go to hell was what prevented me from committing suicide.”

For Chinwe, solution came when she was confronted by a Matron in one of the hospitals she visited who educated her and encouraged her to seek medical help.

“I was confronted by a very nice Matron who encouraged me to go for treatment. She kept encouraging me till I began treatment”, she said.

“I started with ‘Hope Worldwide Hospital. It was from there that I was transferred to a General Hospital and since then I have continued with my medication.

“When I got to the hospital, I met people who had been living with the virus for five, ten years; and that really encouraged me to continue.

“One week after I started my medication, I started seeing changes and I began to wonder if it was truly me because before then I used to have rashes and I was slim. “But unfortunately my first prescription was not the right one and it damaged some of my body organs. It got to a point that I started looking older than my age.

“It was after I was changed to another hospital that I found out that I was taking the wrong drugs. Since I had lost my job, I decided to use the volunteer work to sustain myself because I needed antiretroviral drugs and I had to eat before taking them.

“I had to engage in menial jobs, anything legal to earn a living.

“Later, I engaged in volunteer work for an NGO. There I saw people living comfortably with HIV; initially I thought they were pretending because they looked very healthy. It was not until I went with them to take treatment that I discovered they weren’t pretending.”

Also read: Access Bank, others unite against HIV stigma, discrimination

Calling on government to make antiretroviral drugs free and accessible, Chinwe said, “Government should help us out because we are paying for the drugs and it is not everyone that can afford it. Because I no longer work in the organization where I served as a volunteer, I have to pay for my drugs and sincerely I can’t afford it.

“For instance, anytime you want to see a doctor you must pay for consultation, N2000, drug N1000, lab services N3000. And if you look at the sum total yearly, it is quite expensive.

“It is not everyone that can afford it and that is why we are begging government, especially the Federal Government to help us make treatment free.

“There are some people who don’t even have money for sachet water and to afford the drugs is difficult. And each drug costs N1000 every month and every time you consult a doctor, you pay N2000.

“If you have health issues and have to see the doctor four times a month, you must pay N2000 each time. Same for laboratory fee, so we need the help of government as some people are ready to give up on life when they can’t afford the drugs.

“More so people don’t understand the fact that a negative man can marry a positive wife and still live well and have kids that are not positive. Most people believe that if you are positive, you can’t give birth to negative children. And this has made it difficult for people to disclose their status and prefer to die.

“The reason the doctor asked me to bring someone close was because I was pregnant and they didn’t want me to be traumatised by the disclosure.   Presently they don’t disclose it to a third party; even if you came with someone, they will disclose it privately.”

Severe stigmatisation

Like Chinwe, a mother of four, Funmi Okafor, who has been HIV positive for 19 years, revealed that she too faced severe stigmatisation when she initially discovered her HIV status.

Funmi narrated, “My ordeal started after I lost my husband unknown to me that he had the virus. I discovered a bit late. I was always feeling sickly and I had rashes on my body.

“The symptoms had already started manifesting when my husband’s friend told me what happened to my husband; that he had HIV and his family didn’t want to disclose the information to me. He then advised me to run a test.

“So I went to a nurse and I told her that I had constant malaria. She took my blood sample to the lab and tested it for other things and HIV. When the result came out positive, instead of her disclosing my status to me, she told my friends and like bush fire they spread it around.

“Whenever they sat and I came close, they will run away from me. The stigma was fierce; it got to the point that my friends threw my loads outside saying I couldn’t belongings in the same compound with them anymore.

“They called me names, ‘you this dead woman’, ‘living corpse’. I was forced to pack my things to an uncompleted building where I lived with my four kids, till I was able to raise money to get accommodation where we now live.

“Sincerely it takes courage to live after being diagnosed of  HIV. But being an HIV positive is not a death sentence, you are still who you are. Once you become HIV positive, everybody runs from you but the only relative who knew about my status and was really concerned was my cousin. He kept calling me to remind me of my drugs, how to take it”.

Explaining further,   Funmi said, “This is my 19th year of being positive. In his life time, my husband wasn’t a womanizer. I strongly believe he got infected after he had an accident and had internal bleeding, and the doctors had to do blood transfusion and he took nine pints of blood.

“I believe the blood was not properly screened; it was in the 80s, and we were looking for blood anywhere”.

Advising Nigerians, especially women, the victim noted that it is not everybody that is HIV positive that is a prostitute or got it for living a wayward lifestyle “because my husband infected me, I didn’t know another man. It is this stigma that has made HIV positive people to hide.

“To those who don’t know their status yet, please endeavour to know your status. The earlier you know your status, the earlier you start treatment.

“I also want them to know that HIV is not a death sentence; when you know your status, you can start a new life. HIV is just a sickness because I am still who I am.

“I don’t stigmatise myself. If you are positive and take your drug, there’s still hope and one day cure will come”.

Appreciating Lagos State government,   Funmi, who learned catering during an empowerment program organised by National Agency for the Control of AIDS (NACA), said the skills she acquired during the training will go a long way to help her economically.

Scared for baby

Another victim, who relived the story of her journey since she discovered her status, Chika Nnoruka, said it all began in 2001.

“That was when my baby fell sick and he tested positive to the virus. Then I had to do same test and I found out too that I was positive”, Chika said.

“I was a student and a nursing mother and a widow when I discovered I was positive. I was more concerned about how my little baby would survive. So I began to seek information on HIV, where to access the drugs. I was scared for my baby because I didn’t want him to die. At that time he was 18 months old.

“As of then, the stigma and discrimination was very, very high. I couldn’t believe I would survive. I couldn’t believe that my son was going to survive. The stigma then was extremely high both in the facilities and communities.

“So, people living with the virus were hiding. Nobody wanted to come out because of the stigma. Even at the facilities, the doctors, the nurses, everyone was stigmatising us.

“The situation was so bad that most of us could not come out to disclose our status or go to the facilities to access treatment. And the drugs were expensive and scarce then. “So many people died due to the scarcity of drugs and poor access to treatment. But there is a little improvement today; like malaria, I can walk into a medical facility or a primary health centre to get my drugs myself”.

Addressing challenges

Shedding more light on the issue of stigmatisation, Dr Yinka Falola-Anoemual, the Deputy Director, Gender Human Right and of Care Services, NACA, explained, “People living with HIV still face a lot of stigmatization because the moment a person tests positive to HIV, people don’t want to interact with him anymore; his family abandons him, his partner leaves him.

“To address this challenge, we have been organising campaigns to let people know that HIV is a medical condition that can be managed. It is like every other illness that can be managed. And when properly managed, victims can live like every other person in the society.

“As long as you don’t share body fluid, and there is no blood transfusion, you cannot contract HIV. You can live with people with HIV like every other person, eat with them, sleep on the same bed and you cannot contract it.

“So we need to continue educating the people that it is possible for people living with HIV to live for over 30 years.

“Also we are encouraging people living with HIV to avail themselves with the opportunities available, embrace positive and healthy lifestyles.

“Don’t stigmatise people living with HIV as the HIV/AIDS Anti-discrimination Act prohibits people from discriminating against citizens because of their HIV status. Unfortunately, there are so many people living with HIV that we don’t know their status.

“Those who know their status need a good support system. Generally we have about 1.9% of the people positive with HIV; more than half of people living with HIV are women. More women need to be empowered because we know that part of the issue arises because they are indigent, some of them cannot provide for themselves.

“And because most of them don’t have a source of livelihood, they engage in risky behaviour that can predispose them to contracting HIV.

“Empowerment programmes will equip them economically and give them bargaining power to earn livelihood.   It will also give them skills on how they will deal with the issue of gender based violence”.

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