Fighting for the voiceless

As she started her talk on living positively with HIV, no one would have been able to tell that Bhatupe Mhango had been living with HIV for nine years now. She strutted with confidence as she talked about the stylish jumpsuit she was wearing, which she said had been designed and created by an HIV positive woman in South Africa.

“In launching her book Kufinya Mandimu, Kukonza Chakumwa and a short story series Whisper Not, Bhatupe was quick to add that it has not been easy. She told her audience she had so far taken as many as 7 119 pills as of last month since she was first diagnosed with HIV in 2002. In this interview, she pours her heart out to Cheu Mita.

 

Does your name Bhatupe have any special meaning?

They say my grandmother Nyathara gave me the name Watupe. It is a Nkhonde name meaning no increase, to be given plenty or to multiply. Over the years, my family and friends modified the use of my name and today, I am known as Bhatupe – the ‘B and the ‘W’ are interchangeable, but I also got an ‘h’ along the way.

How has it been like to live with HIV?

For me, one of the major challenges has been to stay on the treatment. Even though we want to normalise, it’s not easy to stay on that regime. Hah! I have switched twice, but the current one is my best combination, I am doing very well on it.

I have been living with HIV for almost nine years. But it’s hard to stay on the treatment every night.  I have been fortunate that most of my drugs from the time I started in 2002, here in Malawi were good.

I was on triomune 60; there are a lot of drugs that have huge side effects. Actually, a lot of people die from the side effects and not the infection itself. About three years ago, I switched my combination and experienced a lot of side effects for about six months.

 

Could you describe some of the side effects?

You can have sleeping problems. The pills might give you hallucinations during the day, so you are awake, but daydreaming or in a trance all the time. You might have a lot of anxiety and panic attacks.

While working for UNAids, I would say ‘let me just pause for a minute and take a break,’ and would find I had been sitting in my chair for three hours without realising it! I would like to normalise Aids, but we need to put it in context. It’s not easy. It’s painful, but it’s something that you can manage.

 

What other things have you gone through due to your status?

Socially, I experienced an extreme amount of rejection. I have had relationships. Getting the guy isn’t the problem, getting him to stay; that’s the problem. Once you disclose that there are all these issues around you, they leave.

It’s not that people aren’t accepting. They are accepting in the beginning and discrimination is gradual.  The person might say they can handle it. After a week or two, you find they can’t handle it at all.  Then, other excuses come up. I have had a lot of awkward social scenarios where I talked to someone at dinner; they promised to call in two weeks and I never heard from them again.  Two years ago, someone told me we would go dancing on Saturday and I am still waiting for that call.

 

What was your first reaction when you discovered you had HIV?

I’ll never forget the conversation I had with the counsellor when she told me I had tested positive. I kept repeating that I was not HIV positive because I was in denial. I even told the counsellor that the hospital had made a mistake and those were not my results because I had been tested eight months ago and I was not HIV positive.

Hard as I tried, I could not shake off the feeling that I had disappointed my family and loved ones. I spent a long time in the counsellor’s office. She let me stay with her until closing time as she was not sure I would cope. She asked me to tell at least one member of my family and my sexual partner, so I could get support. But I wasn’t going to do that.

One the way home, I almost got hit by a bus as I was not watching where I was going. When I got home, in the private comfort of a hot shower, I burst into tears and cried until the water turned cold. I must have been in the shower for at least an hour. Back in my room, I found my oldest suitcase, opened the bottom zip and tucked the medical results sheet inside. I would return to the suitcase whenever I had doubts about my results.

 

Were there any scary moments?

I discovered that I had HIV after suffering from genital warts. At first, I noticed that my eyes were red. When I went to shower, I noticed I had blisters in my vaginal area. A doctor at Queen Elizabeth Central Hospital told me it was genital warts. I was given ointment to treat them. Five weeks after testing HIV positive, I found I had lost about five kilogrammes in body weight. Some days, I would look at myself in the mirror and get scared that I had a few months to live. I imagined I would become skinny and die. Also, being on campus (Chancellor College) exposed me to very stigmatising posters showing people living with HIV as prostitutes and skinny men with beer bottles in their hands. I kept telling myself I was not like any of those people and that I had not done anything bad. I saw more hospital rooms as a child than I have seen in the last few years, even though I have been living with HIV for eight years now.

 

How did you cope?

It was hard. I had to hide the news from my aunt whom I was living with then. My mother died in October 1999 from pancreatic cancer. When I told my boyfriend I was HIV positive, he insinuated I had infected him. My Christian self was telling me I had been wayward and gone against my culture’s views in having sex before marriage. I told myself I was a rotten apple.

 

How did you stay strong? What keeps you going till this day?

I have a strong family support. My older sister Rachel is very supportive of me. When I told her a year after my diagnosis that I was HIV positive, she was heartbroken. She said no one must go through such experiences alone. She has been there for me through all the ups and downs.

 

How did you start your advocacy work?

After disclosing to my sister, I had been working through our church on a project in a village called Kauma; providing food, clothing, shelter to widows and orphans. It was then that I discovered a need to provide information on HIV/Aids and other sexual health issues.

One day in early 2005, out of  frustration at the seemingly hopeless situation, I addressed my church and begged those more fortunate to help these women in Kauma. I revealed my own HIV status and the church was so silent, you could hear a pin drop. From then, people started opening up to me. I have been met with self-pity, I have faced walls of doubt. Sharing my story soon became a boiling passion. I wanted to go out to the world and tell them to better protect themselves and do more about HIV and Aids. Since then, that’s what I am doing.

 

Have you had any intimate relationships after your HIV diagnosis?

Having just turned 31, I now realise that one of my biggest challenge will be to maintain  a long-term intimate relationship. In 2003, I got involved in two relationships as I felt I could manage sharing my life now. But both did not last as I had expected. The first was a young man who insisted on using two condoms whenever we had sex. The whole notion was ridiculous to me and after months of anguish at this sort of degrading treatment, I called it quits. My second relationship was with a man who insisted I was too beautiful and that he would not mind having unprotected sex. I thought he was saying this because he too had HIV. As I was forewarned of co-infections of different strains of the virus, I began limiting my contact with this man. So, the relationship ended before it really began. I am in a relationship now and I am very happy with my man. Who knows we might just get married. We are talking and we’ll see.

 

Where do you think you contracted the virus from?

I was a vulnerable girl from a middle income home. I had sex with a young man without protection before I was tested and found to be HIV positive. I was not a prostitute, I was just a young woman looking for love. I have made peace with the young man. I am happy to deal with my HIV infection and not blame anyone. The truth is we have no way in knowing who infected who.

 

What have you learnt from life’s journey?

My mother told  me one time after losing a football game that you have to accept yourself  and  life all the time, not only when things are good. That remains my motto till today.

 

What memories do you have of growing up?

I was studious, quick to learn and loved the discipline of study and homework.

 

What dreams did you have as a child?

From the moment of my graduation on the honour roll at school, I lived as if I had an important mission in life: I just knew I wanted to do something for the voiceless. I wanted to speak for them and make sure they had a part in society. In many ways, this dream came true for me.

I am also currently in the process of establishing a company to promote African-owned businesses in the San Francisco Bay area, which will highlight young African entrepreneurs in the diaspora and will support global brands to do business in Africa.

 

What can you share of your life that makes you live positively despite what you have gone through?

I have had a lot of people telling me to shut up. They say because I love dressing up and I am looking well, I should not fight for the others, the voiceless. But I love fashion and had dreams before being infected with HIV. I am still working towards getting married and having children.

I know that this will not come easily for me, but that it is not impossible. I continue to give and receive love. I have learnt to be at the centre of my response and of my own life. My rights as a person are not dead. I am not a plague, but just a young woman living with an incurable disease.

 

Why did you decide to share your story with the world?

I have been through a few things that can be avoided and my wish is for others to learn from my experiences. I also want to share that, unlike other chronic conditions such as diabetes, asthma or some cancers, HIV is still treated like a death sentence.

 

What have you discovered about HIV over the years?

Actually, HIV is the only infection that is not a disease. It is a highly, psychologically straining infection. Prior to HIV, I never had issues. When the virus came into my body, it raised all sorts of questions. I realised I have given this thing too much of my time and it can’t continue to dictate to me how I lead my life.

I don’t give it any respect. I say you are in my body and you will do as I say. I try not to let it control me and I take the pills. But I want to say that no matter where or how you contracted HIV, remember that it is just a teeny-weeny virus. We can and we will overcome it.

 

 

 

 

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Fact file

• Born 5 April 1980 at Kamuzu Central Hospital, Lilongwe
• Parents Verity Kadzakumanja and Spy Mhango both deceased
• Grew up in Lilongwe (Malawi), Maputo (Mozambique), Lusaka (Zambia). Mother was a diplomat.