Lillian Mworeko, living positively with HIV, is the coordinator of International Community of Women Living with HIV/Aids (ICWEA). Photo by Abubaker Lubowa.

I met my first husband in 1991 and got married in 1994. He was about four years older and I had just completed my Senior Six when we met. I found out about my status in 1996. I had suspected that I was HIV positive because at the time, my first husband had succumbed to Aids. While I was nursing him for the third and final admission, I did a test and learnt that I was HIV positive too, the same day he died. I had one child with him at the time. The girl, who is 15, is now sitting her Senior Four exams.
When I met my current husband about six years ago, I knew I was living positively with HIV and was looking for someone who was also positive. We became friends and started living together and then wedded in 2011. He, too, knew his status and we met through friends. We have two boys, aged five and two, who I delivered through Prevention of Mother-to-Child Transmission (PMTCT) and they are both negative. I had no fears because I had been on drugs, my CD4 cell count was very high, and my viral load was undetectable. I did not undergo preconception counselling but I did a lot of reading on my own.

I was at the time taking effavirenz, which highly risks foetal development. The doctor wanted me to stop the treatment first, be monitored and then conceive. I thought I was ready, however, so, I decided to conceive anyway. As soon as I was sure I was pregnant, I went to the doctor and asked him to change treatment, which he did. My fellow activists also frowned at my second conception; they did not understand why I had to have so many children even after knowing my status. I thought, “I am a woman, if other women can have children, why can’t I?”
Losing my first husband, discovering my status
My first husband and I had been in hospital three times. We learnt about his status and he actually fell very sick when I delivered. The illness took about one year of being in and out of hospital. I was alone in that kind of situation and when he finally died, I was blamed. And because of this, I never grieved for my husband, so to date, I am emotionally weak. I had requested for a status check and the day I was being given the results, I remember we were putting the corpse in the car to drive home.

I never got any counselling and I was grieving at the time but I was too numb to feel anything until much later. Yet, my in-laws blamed me for the infection. I was mistreated so badly at the time of the burial that my family, although neighbours with my husband’s family in the village, could not attend the funeral.

Resolving to survive
Looking at my one-and-a-half-year-old daughter at the time, and knowing how the family had treated me, I resolved to live to see this girl grow. I remember we were living in a rented house, we had debts to clear, and I was earning and saving very little. I was not used to fending for the family so I was starting life from scratch. I was working for Youth Alive at the time. We used to have meetings every Monday. In one of them I revealed my status and asked for their support. From there I started talking about my status.
Also, I got in touch with Maj. Ruranga Rubaramira, who encouraged me, reminding me I was not alone. And, indeed, when I joined him in advocacy work, I met many other people who were in worse shape. I knew I was better off; I was a professional, a teacher, and I could pull myself together and do something.

Disclosing to my daughter
I did not go through any kind of process with her. I had actually assumed that she knew about my status since I talked about it; I was always on television. She was in Primary Seven when she talked about it. She was not very sure about my status and talked to my friend, not I. But since then, I think she has picked it up because we talk about it at home. She also asked me about her father and we talked.

I tested her recently and by God’s grace, she was negative. I was scared every time I thought of testing her, suppose she was positive. But this time, she fell sick and I told them to check for everything, HIV included.

It was very hard, of course, but it is even more difficult for activists. We are dealing with our own issues of stigma and concurrently community stigma from people we serve yet expectations are much higher than what we can offer. People would expect that if you are so free about your status, there are some things you should do. I, for instance, told her after I got the results although I should have told her before, like I would encourage other parents to do.”

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