What it means to be an HIV positive couple with a positive child

I am Innocent Bitandema, a 41-year-old peasant. I am married to Gloria Ahimbisibwe, a housewife aged 35 with four children.

In 2004, I started coughing and I had on and off fever. When the cough became profuse, I went to the health centre where I was diagnosed with Tuberculosis (TB).

It’s said that whenever someone has TB, there are high chances that they have HIV. So when they told me that I had TB, I also asked for an HIV test and indeed I was positive.

At first, I was afraid of telling my wife about my status. But after a number of counselling sessions, I opened up to her in 2005.

Ahimbisibwe
When he told me that he was positive, I was very scared. At first, I thought I was going to die right there and then.

However, when I went for the test and it turned out positive, the doctors encouraged and counselled me. With their help, I was able to calm down.

Bitandema
I am to blame for this illness because at times I would sleep with other women without taking any precaution.
However, when we learnt of our status, we decided to live positively.

In 2009, we were blessed with a healthy baby girl. At birth, she was negative and for the next six months she always tested negative.

Ahimbisibwe
However, when she made seven months, I brought her for another test and this time round she tested positive. I think she contracted the disease through breastfeeding.

When I learnt that she had HIV, I felt very bad and for some time, I blamed myself because I breastfed her for longer than I had been advised. At some point, I wished I could turn back time and undo what had happened. But unfortunately that was impossible.

Bitandema
My greatest worry was how we were going to take care of her. Being a person living with HIV, I knew how much care is required. So my biggest worry was how I was going to feed the three of us on a balanced diet.
During that time of confusion, I needed a lot of solace. So I decided to join the peer team at Rugazi health centre iv to educate people about HIV, how they can prevent it and how to live a healthy life even when you have it.

However, it took me a lot of courage to start doing this work because people would laugh at us. They would say, “The whole of Bitandema’s family is HIV positive.”

At first, I would try to hide away from the public but now that I am on the peer team and I know that HIV is not a death sentence, I can now ignore the stigma. Our baby has scabies around her neck.

Thus for her safety and to keep people from picking on her, we cover her with a scarf so that no one sees the scabies. She has not yet tested for the CD4 count, so she is still on septrin. I think it is because she is not on ARVs that she has red lips, eyes and her body is swollen.

She is always falling sick with malaria and cough. The major challenge is that when she gets any of these two, they take long to heal. Another challenge is that I do not have enough money to buy milk which is needed for us to keep healthy. On occasions when I am really hard up, we all go without milk.

Food is also a problem because our banana plantation in Bunyaruguro was struck by hailstones and we lost all the bananas. So at times we do not have enough food and the best I can afford is a single meal a day.
From my work as a peer team member, I earn Shs80,000 per month but I put all this money aside to pay for my children’s school fees because my greatest fear is what will happen if we die and yet our children are not educated.

Right now, I am hoping that my daughter tests for the CD4 count so that she can also start on ARVs. I am sure this will lessen her chances of falling sick because she is now three and I want her to go to school.

As told to Sarah Tumwebaze
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Dealing with HIV stigma

A good first step in responding to it is to try not to blame yourself. Try to remind yourself that what you’ve experienced is wrong – it should help you to respond constructively to what you’ve experienced.
Talking to someone close to you or that you trust about your experiences is also likely to be helpful. HIV support agencies can be very useful at such times.

If you’ve been harassed or assaulted, then you might want to contact the police. It’s good to know that your local HIV organisation will be able to help you if you feel you need some advice or support to do that.
It can also be helpful to have information on how to respond to stigma and discrimination should you experience them in certain situations.

Family and friends are often the first place people with HIV turn to for support. Millions of people with HIV around the world are loved and accepted by those closest to them.

The knowledge that those you love and know best are there when you need them can not only provide comfort but also the confidence and strength to deal with stigma and discrimination in the wider community.
Many people find it difficult to tell their family, loved ones and close friends that they have HIV. But it can be worthwhile because of the support it can unlock. Even if someone reacts badly when they first find out that you have HIV, their attitude might change over time.

If you don’t feel able to trust or rely on family or friends then it’s good to know that specialist HIV organisations can help. If you feel that you are alone, try and remember that you are not.

People with HIV can be welcomed, accepted, supported and loved by the community or communities to which they belong.

Unfortunately, many people in the communities most affected by HIV have very stigmatising views about HIV. What’s more, people with HIV often stigmatise other people with HIV.

Nevertheless, it’s good to know that many of the most important organisations offering support to people with HIV have their roots in the epidemic.

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