Love, Loss & Life: Real Stories from the AIDS Pandemic: Winnie Sseruma

As a young woman, Winnie only gradually became aware of the word Slim, as AIDS was called in Africa, which was devastating communities in Uganda in the 1980s. When she was diagnosed HIV positive, she believed she was under a death sentence until she came to the UK and found both support and effective treatment. Her mission ever since has been to convince others that HIV need not be a barrier to living a full and fulfilling life.

This podcast series features stories taken from our first book, a collection of essays, reflections, and testimonies also entitled ‘Love, Loss & Life’ which you can buy here.

An audiobook is also available here.

Visit the National HIV Story Trust website

Transcript

Unknown: 0:07

Love, Loss and Life. Real stories from the AIDS pandemic. This is Winnie Sseruma's story read by Elexi Walker with an introduction by Anita Dobson.

Anita Dobson: 0:34

Winnie Sseruma was born in the UK of Ugandan parents, both teachers who returned to Uganda and brought her up there. In 1981, she won a scholarship to go to the United States to study sociology at University in Kansas. After being diagnosed with HIV in 1988, she began to volunteer, supporting other people living with HIV, particularly among black African communities. She has gone on to expand her work internationally, working for Christian Aid, and as a freelance consultant. As a young woman, Winnie only gradually became aware of the word Slim, as AIDS was called in Africa, which was devastating communities in Uganda in the 1980s. When she was diagnosed HIV positive, she believed she was under a death sentence until she came to the UK and found both support and effective treatment. Her mission ever since has been to convince others that HIV need not be a barrier to living a full and fulfilling life.

Elexi Walker: 1:46

In Uganda, before I left for the US in 1981, there was talk of people growing very thin and dying through supposed witchcraft. But at that point, I'd never heard of the condition called Slim in Uganda, because people lost so much weight before they died. Uganda at that time was in turmoil. Idi Amin had been driven out of the country, Milton Obote was on the brink of power for the second time, the country was in chaos and almost on its knees. As is often the case in Africa, poverty, wars, and lack of proper health care, obscure what is really happening on the ground. While I was in America, I started to hear through the media about a condition known as GRID, Gay Related Immunodeficiency Disease. At that stage in the US, there was little information on how it affected women if at all. My university was run by Catholic nuns, so we were to some extent, in a protected little bubble. It was only when I returned to Uganda for a short time that I realised people were dying, not only as a result of the war, but through this same condition. It was shrouded still in secrecy and mystery. At funerals, AIDS was rarely mentioned as the cause of death, which would be attributed to pneumonia or tuberculosis. Yet, it was widely known that whole villages in East and Central Uganda had been wiped out by slim. During my visit home to Uganda, I dated a couple of ex boyfriends without thinking much about it. At that stage, the mechanism of transmission of HIV was by no means clear. When I flew back to the States, I was to take part in an internship programme to get experience of Social Work. Anyone applying for such a position was required to be tested for various health conditions. When my results came back, I was told there were inconsistencies in my blood. They suggested further tests, one of which was for HIV. I had no suspicion I might be carrying the virus. So discovering I was HIV positive was a major shock. That threw me utterly, of course. I was living each day as if it was my last, because I didn't know how long I could expect to live. And no one could tell me, since so little still was known about the illness. I was thousands of miles from my family, and didn't want to tell them because I knew it would worry them. Nor could I tell my friends, because you would hear conversations where people asserted that if they were sitting in a group with someone who had HIV, they would get up and leave. I remained utterly isolated for six years, during which my younger brother in Uganda died of HIV related TB. Soon after, both parents died of cancer, so half my family was gone. The counsellor I was seeing in the US who disclosed he was HIV positive, died too. It felt it would soon be my turn. So in 1994, I went home to Uganda to die, to save my siblings the cost of flying my body home. As she was helping to unpack my luggage, my sister spotted my HIV medication. In those early days, I was on AZT and DDI. She hid her shock and anxiety, and told me that she had friends living with the virus, who knew private clinics that could help if I got sick. Before long, I almost had my wish of dying in Uganda, as I went down in quick succession with pneumonia, TB, and really bad diarrhoea. But my great good fortune was that I could afford good care then, and an HIV clinic kept me alive. Two years later, I left for the UK to visit another brother. I had run out of HIV medication some time before, because I could no longer afford it. It was not available in Uganda at the time. And this was meant to be just a short visit to recuperate. While there, I decided to get myself checked out at Newham General Hospital. The doctor broke the news that I had a CD4 count of one, which meant I had AIDS. Footnote, a CD4 count reveals how many disease fighting T cells are in your immune system. A normal healthy person's count would roughly be between 500 and 1500 per cubic millimetre of blood. I was devastated. Now I was certain I would die. But my brother knew someone with HIV, you went to a local support group, Body and Soul. It was the first support group I had ever come across. And I found 60 or so other women there living with the virus, all of whom were now on combination therapy, and miraculously recovered as a result. It was an awakening of sorts. I decided there and then I should stay in the UK. And I hoped to get better in a way that was not possible at that time in Africa. I volunteered atb Body and Soul and began to network with others in the HIV sector. When I was sure I was doing well on the treatment, and felt fit enough to work, I found a job with a small agency evaluating HIV projects. By this time, I had identified a void. Since not many African people were speaking up about HIV, especially women. That was to be my mission. And I haven't shut up talking about HIV since. I saw it as my role to support others living with HIV, especially those in the black African community. To persuade them they should seek testing and treatment. Many were reluctant for all sorts of reasons, for fear of side effects of the medication, or that it would reveal to others they were HIV positive. Yet they were one of the group's most impacted by the virus. And if a husband failed to get tested or treated, he would risk passing it on to his wife and through her to future children. We have to see HIV and AIDS as not just a local issue, but a global one, which is why I began working in the international sector. How much stigma is attached to the virus and how easy it is to access treatment varies across the globe. There's still so much ignorance. In Africa, many people still lose their jobs and their livelihoods when they are found to be HIV positive. Through my international work on the issue, I visit many countries in Sub Saharan Africa, where women and children living with HIV still have no access to treatment, because their governments can't afford to institute proper health care for them. There are also many widows and orphans who need support and aren't getting it. In Uganda, I co-founded a project supporting vulnerable young people. So before going to school, they can have breakfast, a cup of porridge with vitamins in it, which helps them stay healthy, and concentrate on lessons. Here I am, more than 30 years on living a near normal life in spite of the fact there is no cure. I want everyone throughout the world to understand that people with HIV can live a full life and succeed in whatever they want to do without fear or prejudice. That's my way of paying back this precious gift of life I can now enjoy through HIV treatment.

Unknown: 9:26

Thank you for listening to this story from Love, Loss and Life, a collection of stories reflecting on 40 years of the AIDS pandemic in the 80s and 90s. To find out more about the National HIV Story Trust, visit nhst.org.uk. The moral rights of the author has been asserted. Text Copyright NHST 2021. Production Copyright NHST 2022