Health News

Revealed: The pain, anguish and trauma of living with HIV

…Women living with HIV break silence
…urge government to create easy access to antiretroviral drugs

By Lolo Ayaba

Over the years stigmatisation has been one of the major challenges persons living with the immunodeficiency virus (HIV) face on daily basis in Nigeria.

Most people living with HIV are stigmatised by friends, families, and even loved ones. Some of them lose their jobs while others are forcefully evicted from where they live because of their HIV status.

In-spite of the numerous awareness and sensitisation campaigns carried out by the government and nongovernmental organisation as well as the HIV/AIDS Anti-discrimination Act 2014 which makes it illegal to discriminate against people based on their HIV status and also prohibits any employer, individual or organization from requesting a person to take an HIV test before employment, very little has changed in terms of stigmatisation.

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

Unfortunately stigmatisation has pushed so many persons living with immunodeficiency virus (HIV) into depression, while others who can’t endure the shame have taken their lives.

When Chinwe Ike first tested positive to human immunodeficiency virus (HIV) in 2004 not only did she not believe her test results, she had to endure terrible stigmatisation in the hands of close friends and associates.

According to Chinwe, “My challenge then was the stigma; it was too much for me. The fact that I trusted my friend who is a nurse and the only person who it was disclosed to was the one spreading it, made living with that kind of stigmatisation difficult.  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 loves me came closer to me. To the extent that I was given a quit notice by my landlady even though I didn’t owe her, she insisted I must leave her house. If I had the knowledge I have now I would have sued them. But due to my ignorance I left the compound because they threatened to kill me. I lost my job then where I worked as a secretary/cashier at a company at Alaba International market then. It was later I discovered that it was my friend that went behind to tell them that I am HIV positive. I had to leave the street and relocated to another environment.”

Recounting how she discovered her status, Chinwe Ike disclosed that “I first tested positive to HIV in 2004. I initially discovered my status in 2004. But I didn’t really know what ailment it was, as the health workers called it XYZ then. I had to run the test three good times in different laboratories to confirm my worst nightmare. And every single time the results came out positive.  I was in a state of denial for three years without seeking for solution. That was after I had my baby in 2006. When I was pregnant and was sick, I had to go to the 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 don’t even know what having girlfriend and boyfriend is all about. That is why I didn’t believe the test results when it came out”.

“After I got well, I was discharged and went home. After a while I went into labour and I had o go to a private hospital. It was at that private hospital that they discovered it but the doctor did not disclose it to me and he asked me to bring a close relative. Unfortunately for me I brought my friend who I thought was a close friend. 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 families deserted me. I lost my baby two months after I delivered. As at the time she passed on I haven’t began treatment. I wasn’t taking treatment then so she developed cough and I think that’s what killed her.”

The pain, anguish and trauma of living with HIV

To make issues worst, I refused to seek solution then because at one of the laboratories where I ran the test the attendants who had misconception said that someone with a HIV cannot give birth nor get married and there was no 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 the hospital and decided that if am to die then death it is. To the extent that I attempted killing myself with a knife. It was my belief as a Christian that held me back. The thought that if I take my life I will go to Hell was what prevented me from committing suicide.”

For Chinwe Ike, salvation came when she was confronted by a Godsent matron in one of the hospitals, 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. I started with ‘Hope worldwide hospital. It was from there 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 have been living with the virus for the past five to ten years; it really encouraged me to continue. When I started my medication after one week, I started seeing changes that I begin to wonder if it was truly me because before I used to have rashes and I was slim. But initially, something unfortunate happened; my first prescription was not the right drug I am supposed to take and it damaged some of my body system. It got to a time I started looking older than my age. It was after I was transferred to another hospital that I found out that I was taking the wrong drugs. After I lost my job, I decided to use the volunteer work to sustain myself because I needed my antiretroviral drugs and I have to eat before I take it. I had to engage in menial jobs; anything legal to earn my living. To survive I had to do 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 until I also went with them to take the treatment that I discovered they weren’t pretending.”

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Calling on the 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 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 N3000. And if we are to sum it yearly it is quite expensive. It is not everyone that can afford it and that is why we are begging government, especially Federal government to help us make it free. There are some people that don’t even have money for pure water and to afford the drugs is difficult. And each drug cost N1000 for a month and every time you consult a doctor, it is N2000. If you have health issues and have to see the doctor four times in a month, you must pay N2000 each time. Same as the laboratory fee, so we need the help of the 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 an HIV negative man can marry an HIV 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 why they 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 come with someone, they will disclose it privately.”

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

According to Funmi, ‘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 to me. He then advised me to run test. So I went to a nurse and I told her that I have constant malaria. When she took my blood sample to the lab, she tested me for other things and HIV. When the result came out positive, instead of her disclosing my status to me, she told my friends so like wide fire they spread it around. When they sit, if I come close to their midst they will run away from me. The stigma was fierce; it got to the point when my friends threw my loads outside that I can’t live in same compound with them. They called me names, you this dead woman, living corpse, and they humiliated me. 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 live.

Sincerely it takes courage to live after you find out that you are HIV positive.”

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 “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. He took nine pants of blood. Most of the blood were not properly screened it was in the 80s, and we were just looking for blood anywhere.”

Advising Nigerians especially women,  Funmi noted that it is not everybody that is HIV positive that is a prostitute or got it from 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 there status yet, please endeavour to know your status, the earlier you know your status, the earlier you start your 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 the cure will come.”

Appreciating the Lagos state government,  Funmi who trained as a caterer during the empowerment program organised by National Agency Control for  AIDS (NACA), said the skills which she acquired during the training will go a long way to help her economically.

Recounting 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. I was a student and a nursing mother and a widow, when I discovered I was positive. I was more concerned about my little baby’s  survival. So I began to seek information on HIV, were 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 at then the stigma and discrimination were very, very high. I couldn’t believe I would survive it. I couldn’t believe that my son was going to survive it. The stigma then was extremely high both in the facilities and communities. So, people living with the virus were hiding themselves. Nobody wanted to come out because of the stigma. Even then, at the

facilities, the doctors, the nurses, they were all stigmatising us. It was so high, that most of us could not come out to disclose or go to the facilities to access the treatment. And the drugs were expensive and scary then. A lot of people died due to scarcity of drugs and how to get access to treatment. But there is a little improvement today, like malaria I can walk into a medical facility, or primary health center to get my drugs myself.”

Shedding more light on the issue of stigmatisation, Dr Yinka Falola-Anoemual, the Deputy Director Gender Human Right and of Care Services National Agency Control for AIDS (NACA) explained that “People living with HIV still face a lot of stigmatization, because people believe that the moment a person tests positive to HIV, people don’t want to interact with them anymore, their families abandon them, their partners leave them.

To help 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 they 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 contact HIV. You can live with people with HIV like every other person, eat with them, sleep on the same bed, you cannot contact it. So we need to continue educating the people that it is possible for people living with HIV to live for over thirty 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 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 people who are HIV positive; more than half of people living with HIV are women. More women need to be empowered, because most of the issues women face is because they are indigent, some of them cannot provide for themselves. And because most of them don’t have source of livelihood they engage in risky behaviour that can expose them to contracting HIV. Empowerment programmes will equip them economically and give them bargaining power to earn livelihood.


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