Why are people living with HIV stigmatised. Those who stigmatise are those who have falsely believed that the virus is very contagious which can put them at risk of infection. Many people living with the virus become a threat in their society to those who have never tested and sometimes to those who have even tested. HIV positive individuals face depression due to isolation in their workplaces, homes and in public. Many have lost their jobs, broken marriages and homes due to public knowledge of their status. Many at times too they are stigmatised by peoples assumptions that they got HIV through risky sexual behaviour.
I had a chat with Mrs Charity Baluo, an HIV positive woman who lost her husband to AIDS but is now married to an HIV negative man and has an HIV negative 5 year-old son. support group for people living with HIV.
How did you get the HIV infection and how did that affect your life?
I got tested in 2002 after losing my husband to AIDS. My husband was the type of man who preferred a home self-treatment to consulting a doctor, and he got pretty sick to the point where I decided that he had to go to the hospital. Ironically, before then I had told him in the past of how people might joking say he has AIDS due to his frequent ill health. He also replied that if he had AIDS then I also being his wife, also have it. That didn’t seem funny afterwards when he was diagnosed. Back then, most people didn’t know the difference between HIV and AIDS so most people said AIDS instead of HIV. I have always harboured this feeling that being a married woman meant I was free from HIV infection. When my husband passed and the tests revealed that he had died of AIDS, I refused to believe it for the fact that I saw him to be a faithful husband and I knew I had also remained faithful. After my husbands death, his family took every property he left behind leaving me destitute and hardly able to support myself and my three children.
You faced self-stigmatisation. How did you overcome it?
I started to self-stigmatise my own self and became passive by refusing to accept that I had the virus; I stayed at home and refused to go to a hospital for treatment or counsel, I denied everything around me, hated everything in my environment all for the fear of rejection and stigmatisation by others. It got to a point where I had deteriorated so badly and by chance I met one of the counsellors at the hospital who told me of how HIV didn’t kill but how I was treating myself was rather leading me to an early grave. The counsellor I met supported me financially for health treatment. It was only when I got to the hospital that I realised i wasn’t alone in this; I saw people who could hardly walk when called to the consulting room and I even had to assist a few to the doctors. I realised my situation wasn’t as bad as I thought compared to others and in that instance I realised I had to help these people and I prayed to God to give me life to do this. This gave me purpose to live and motivated me to take better care of myself. A Catholic Father took me under his wings whilst I was there because of the uniqueness of my story i.e I was a married woman who got infected. Father Bobby Benson then asked if I was interested in raising awareness about HIV to people who believe are safe from the virus because they are married. I agreed to this. Through this I became more courageous as I went with him to different towns and villages, schools and churches talking about HIV. This was key in helping me overcome self-stigmatisation and societal stigmatisation.
Anti-retroviral drugs weren’t available back in 2002, so how did you manage to boost your immunity and reduce the strength of the virus.
You can’t imagine how dismayed I was when I was told by a hospital nurse that there was no available treatment but to dispense Septrin to HIV persons. She however gave me an alternative to go to Akwatia for a herbal preparation which according to her boosts the immune system. I followed her advice and once again I realised that I wasn’t alone with this disease.
Support Group of People Living With HIV. Can you tell us more about that?
I happened to come across this support group during my travels to Akwatia for herbal treatment and I decided to join. This was a support group for people living with HIV where several individuals came to donate and support us and also we as HIV individuals came together to share experiences and ideas on the way forward on living with the virus.
What was your family’s reaction to your status?
Initially I was very reluctant to reveal my status to my family after I was told my status. After awhile, I realised that I was only fooling myself and no matter what I did, the virus was still going to be with me and I was still going to be myself. I mustered courage and told my mother, this wasn’t easy but I managed to do it. She didn’t react to my news but the following day I realised she had wept all night long. I was initially expecting her to drive me out of the house or have a cold attitude towards me. I wasn’t her expecting her response; if she could accept all the care and good things I bring into her life then she should be able to accept this as well. We have been living very well after that. The extended family was a bit of problem but they had seen my work as an ambassador on Crystal TV so they knew it was something real. I had a discussion with an uncle of mine who was confused as to why I had held back from telling them the truth and went through all this alone. I explained how I wasn’t sure about their level of understanding with HIV and how they would react to my status whatsmore i chose whom I wanted to reveal my status to.
You are married to an HIV negative man now. How did you meet him and what was his reaction to your status.
One day whilst walking home from church, he approached me and offered to walk me home. This became a two months friendship until the day he proposed for relationship above being just friends. I was a bit shocked as I never imagined that a man would think of proposing to me, a woman with three kids. Now came the dilemma of revealing my status to him. Aside praying for guidance, I also had been educated and informed through the Support Group of People Living with HIV on how to disclose your status to your partner. He knew I worked with this same support group so i began educating him more on HIV such as prevention of mother-to-child transmission to have a negative HIV child, stigmatisation etc. I then told him I my status and his reaction was, ‘How can I say such a devilish thing?’ I was shocked! After everything I had said it seemed it hadn’t gotten through him yet. He refused to accept my status claiming I didn’t look like an HIV person. I also refused to accept his proposal until he got himself tested and accepted my status. He wanted me to test as well to confirm what I had told him earlier. The results finally came and his was negative. I was still positive. He was really amazed how he had dated several women in the past but none of them had ever discussed HIV with him or even their statuses. Based on everything he now knew about HIV, he decided to marry me. We now have a 5 year-old boy who is HIV negative. We are living happily together now as a family of six amongst whom I am the only person with HIV.
Your kids from the previous marriage, how are they dealing with your status.
They were all tested after my former husband died of AIDS. I told them my status explaining first to the eldest. This wasn’t easy for me to do but I knew they had some awareness about HIV as they had been taught about it in one of their syllabus in school. She was very understanding and I explained how I had to keep taking the anti-retroviral till the day I passed on. I advised her on keeping herself well so she doesn’t end up like me. I was fearful of the effect of my status on them in their school and amongst their friends but they have been very strong and defensive of me amongst their peers.
What was your occupation and did you lose it because of stigmatisation?
I was a seamstress some years ago when I was with my late husband and I also run a catering business. Strange thing is, I don’t know how the neighbourhood or community I used to live in got to know of my status. I had a friend in my neighbourhood who I trusted and shared my status with and he was very supportive during that difficult time so you can imagine how shocked I was when the news got around. I had in stock some fabrics in my shop to sew for some customers but because of my weakness and ill-health I couldn’t work on them until I started getting better. But none of my customers wanted their finished clothing anymore as they had heard of my status. The same also affected my catering business. No-one, not even a fly came by the shop to buy any food. I closed the container and moved out of the community. When I got to the new area, I converted my car into a taxi which I run myself. I became a taxi driver at the Kasoa station. I later sold the car and went into selling building materials such as cement, nails, etc in the area which was a developing site. It was lucrative for awhile until a competitor moved into the area and opened a bigger retail building materials shop. I moved the container to the side of the road near my house and started a cold store which also had a mini-grocery market attached to it. But now I have dedicated my time and resources to the support group.
How much work have you done so far with the support group?
My trips to Akwatia made me realise the potential of having a support group in my area to help those who need financial, emotional and mental support. I first asked myself if I was ready to face the stigmatisation from the community which could come from this initiative I was hoping to take. I decided to move forward intuit. So I formed the Support Group of People Living with HIV at the health centre where we were receiving treatment, we were about 40 members in that group. We sourced some funds for income-generating activities as many people had lost their jobs due to stigmatisation. We started with a piggery project and bought 2 vehicles to assist in our movement to other communities. Our monthly meetings also helped to share our experiences with each other and our numbers have also grown over time. Currently we aren’t receiving funds anymore from previous donors which was the Global Fund through the National Aids Control Program and also the World Bank through the Ghana Aids Commission. However all the funds have been pulled because Ghana has been upgraded to a middle-income status so we are being asked to source for funds internally. Funds being provided by the government however hasn’t been sufficient. Currently, the support group has now been turned into an NGO to be able to write proposals and the like for our projects. We are currently working with schools by designing programs for students to raise awareness on HIV and a future plan is to help the aged in society. The support group helps traumatised people living with HIV who are unsure of what to do, living in fear and self-stigmatisation. When new persons who have lived with HIV for 1 year, joins the support group and meets people like myself who have lived with HIV for the past 12 years they often wonder how we have been able to survive the virus this long. This motivates them to follow the steps which we have over the years. When there is lack of funds, its difficult for members of the regional support group to meet in order for us to share ideas. Initially, we realised that when a person is diagnosed with the virus, they sell all their properties to get a cure or solution at prayer camps and healers. Its only later when they come to their senses that they decide to visit a hospital they would have lost huge amounts of money. Many herbalists trick many HIV individuals with different fake ‘healing’ potions from about GHC2,000 and of course the individual will move heaven and earth to pay this money for a ‘cure’. But when they attend the support group they realise what the anti-retroviral does and are saved from descending into worse health conditions and financial loss. Without a support group many individuals will lose their lives for lack of knowledge on how to live healthier to stay alive longer with HIV.
If you are reading this post and have stigmatised a human being for being HIV positive, then SHAME ON YOU! You won’t get tested and know your status yet you mock and stigmatise someone who has declared theirs. Thats very hypocritical and shaming. Its better for us all to know our HIV status and to accept those with HIV instead of ostracising them from our community.
Charity Baluo is currently an ambassador for the Heart to Heart Campaign which is an HIV advocacy campaign being run by the Ghana Aids Commission.