“The good news you don’t have syphilis. The bad news you have HIV. Oh, and you have about 7 years to live.”
That’s how I received my HIV diagnosis almost 28 years ago, from a USA immigration doctor who eyed me with mingled revulsion and curiosity.
I’d just got married to my second ex husband (I’ve had 3 so far, collected like stamps) and part of the immigration process was to have an HIV test. It didn’t cross my mind it would come back as positive, all I knew about HIV was the harrowing awareness campaigns of the late 1980s, with tombstones and icebergs – a disease I believed that would never affect women like me, but I was wrong. As was the doctor about my life expectancy clearly. There was effective treatment at the time, he just didn’t know about it.
My HIV diagnosis was devastating, particularly as my children were only 5 and 7 at the time. I didn’t think I would live long enough to see them grow up to be men, but I have. And have had two more incredible children, all born free of HIV.
Normally I move on, when I share my story. Gloss over the raw choking trauma of being given a death sentence with young children. And a death sentence from a stigmatised health condition. But not today, especially as I’m writing this as a member of 4M, an organisation dedicated to supporting mothers with HIV. Our journeys with HIV are often vividly coloured by our experiences of motherhood. There are many layers to my identity, but my driving force, the part of me that forces me back on my feet despite being repeatedly being knocked down, is being a mother.
As mothers, the decision about if we’re open about our HIV status, or how much we’re open, or who to tell, or when to tell is often affected by concerns on how it will affect our children. There’s no definitive right or wrong way to do things. We are all unique.
I didn’t say anything to my children when I was first diagnosed. At the time I thought sharing my HIV diagnosis with them would be too distressing. And then later it never seemed to be the right time. Even when they knew I was working for an HIV organisation. Even when I was open about my status to others and wrote about it, supposedly shamelessly, in a regular column for Positive Nation magazine.
It was only when I was diagnosed with cancer a few years later, I blurted out about my HIV status to my teenage sons. They were incredulous. Not because I had HIV, but because I had kept it from them. My second son has subsequently become a prominent HIV activist himself. I told my youngest two children when they were small, so HIV was never an issue for them, as far as I can tell at least.
As mothers with HIV trying to navigate decisions about pregnancy and beyond can also be tricky. My youngest two children were born in 2004 and 2008, at a time when mothers didn’t readily have options like vaginal deliveries and breastfeeding they do today. There was still the prevalent societal misconception then that women with HIV couldn’t have children. I challenged this by posing naked on the cover of Positive Nation seven months pregnant, lounging unashamedly on a sheepskin rug. I wrote the feature article, celebrating that women with HIV with access to treatment would also certainly have children born free of HIV, that it was our right to have children if we so chose. The feedback was predominantly positive, including from a woman with HIV who wrote to me to say her doctor had almost persuaded her to have an abortion, but after reading my article, she chose to continue with her pregnancy and had her baby who was born free of HIV.
Having accurate information and hearing about the experiences of other mothers with HIV is enormously helpful in making informed decisions about our health & wellbeing, and that of our children. 4M Network is uniquely placed to deliver that to mothers with HIV, with an abundance of joy and sisterhood, even in the darkest of times. HIV can be incredibly isolating, particularly as women facing intersecting forms of disadvantage, but as a member of 4M we know we are not alone.
As well as being a member, I’m also loving working closely with 4M, as Co-Founder of Phoenix Health Movement, the non-profit organisation dedicated to addressing health inequities affecting Black women. Look out for our joint video resources on HIV and mental health, released very soon!