It was 1992; I was just coming up to my 32nd birthday and full of the excitement of having a baby. My GP, who knew that I had lived and worked in Africa, suggested that I should have an HIV test along with the regular tests in pregnancy. I was completely fit and well, so I thought fine, no problem. All the other results came back fine, apart from the test for HIV.
Nowadays, over 99% of children are born HIV-free if their mother is on medication. But in 1992, before antiretroviral drugs were available, if I went ahead with the pregnancy it was feared it would affect my health, the baby’s health, or both of us, leaving my older children motherless.
Losing a baby is devastating. Having a miscarriage is bad enough, but having to have an abortion because of a life-threatening illness... it’s horrible. Testing positive for HIV back then was basically a death sentence; along with the grief of losing the baby, I thought I was also going to die.
My husband was incredible. He was, and remains, HIV negative, by the way. My GP was an incredibly lovely lady; the first thing she asked after the diagnosis was: “can I give you a hug?”. The HIV consultant very kindly saw us the next morning, on a Saturday, and my obstetrician was wonderful. Nonetheless, even with that fantastic support network, I was completely devastated. I remember walking down Regent Street thinking the best thing I could do was to just throw myself under the next bus.
However, that evening I went to meet a group of other women living with HIV. The woman who was leading the group said that she’d been diagnosed in prison, while there on a drugs charge. The warden told her; he came and opened the hatch in her door, said, “oh by the way you’re HIV positive”, then just slammed the hatch shut and walked off. She decided to get out of prison, get off drugs, and make sure that no other woman would have to go through that experience.
If she turned her life around, how dare I take the easy route out to go and think about suicide? I, too, had to sort myself out and go and do something for other women. I’ve now started the Salamander Trust, which works on HIV and women’s rights.
A third of people with HIV in the UK are women, and hardly any of us are open about our status, because of the horrifying stigma. When my two children were at school, if ever the word HIV would come up, other kids would say “GAYS! AFRICANS! JUNKIES!”… there was such such racism and homophobia, criticising anyone of a different lifestyle without any sense of solidarity. HIV brings all of society’s worst prejudices to the fore.
The stigma is there in religious communities too. From some, I’ve had fabulous support. Sadly, from others, there has been very little understanding. There are pockets of excellence, but wide oceans of intolerance. There’s a great Ugandan priest with HIV who says: “religion brings out the best and worst in us”. I’ve felt drawn to Buddhism over the last few years, but in my experience, most people who don’t have a faith still have an extremely firm set of ethical principles.
What does motherhood mean to you? These tales and portraits were collected by two Faith Fellows working with Proshanti, a charity set up in response to the need for health facilities for mothers and families in Bangladesh.
Originally exhibited at the V&A Museum of Childhood in London as a pop-up 'Museum of Motherhood' (no link to the wonderful M.O.M. in New York) we're delighted to be sharing these diverse stories as part of our travelling exhibition: Story of Mum: mums making an exhibition of ourselves.
To find out more about Proshanti's work or donate, visit www.Proshanti.org.