Blog by Rebecca Mbewe
It has been 28 years since I learned of my HIV diagnosis. The details of the day have since become hazy. I do recall however, my emotions surrounding it all – the confusion I felt at not understanding what it meant to have an HIV diagnosis, the way my life would change in that instant. The healthcare staff were certainly acting like this was a huge thing. Of course it was!
At that time, getting a diagnosis meant a very poor prognosis. We were being prepared for a short life-span. I remember parents being encouraged to leave memory boxes – boxes that contained memories for children in the event of parents passing. We were being encouraged to leave wills and have funeral plans in place. It was quite a dire situation.
In hindsight I realise how naïve I had been. Even though I had migrated from a sub-Saharan country that had high rates of HIV, I personally had not met anyone with the condition or known anyone who had died of HIV or AIDS as it was known at the time. Perhaps I just didn’t realise what it was!
I was fortunately diagnosed at the cusp of things changing – treatment was becoming available and even though it was quite toxic, it provided some semblance of hope. I was lucky enough to be diagnosed when my health was still in good form. I was able to wait a number of years before I started treatment for myself. That in itself was a blessing because I started when the HIV drugs were not as toxic as before. I always make it a point to accord huge gratitude to those before us who did take the very first drugs because, without them, we would never have been able to enjoy the newer drugs.
Soon enough there were other developments such as the introduction of opt-out testing in ante-natal testing, which meant interventions could be put in place to prevent babies being born with HIV. This was a gamechanger, in that it reduced the number of vertical transmissions to less than 1%.
The landscape for HIV was improving in most areas except around stigma. To this day, stigma remains one of the biggest killers from HIV. It is what drives me to continue to do the work I do providing training around HIV awareness to the general community but also support, mentoring and advocacy for people affected or living with HIV. I was also fortunate to have been introduced to peer support at the very beginning of my journey. I truly believe that if not for peer support, my journey would have been very different. With the support of other women living with HIV, I was able to navigate the next few years of emotional and physical abuse, dealing with immigration and housing issues and just being able to access groups where I was able to talk about HIV in a safe space and without being judged.
It was not long after that I felt I was in a position to give back and trained to become a peer mentor myself. I became formally engaged with HIV organisations through being employed, through various health campaigns, sitting on steering groups, contributing to discussions and through sitting on various panels. I became a member of the UK Community Advisory Board (UKCAB). As someone who had been through the pregnancy journey with HIV, I trained as a mentor mother to be able to provide mentoring and support to other women going through the perinatal journey.
Now I feel I am on the other side of HIV. When I got my diagnosis, I was merely 28 years old – today as a 57 year old woman I belong to a cohort of women ageing with HIV. Who would’ve believed it?! I then embarked on helping to develop a project on women ageing with HIV. Women with HIV GRowing Older Wiser and Stronger (GROWS) was a collaboration between Positively UK, where I was positioned, the Sophia Forum, UCL and National AIDS Map (NAM). We developed research and a training programme to support and train women ageing with HIV on matters that impact us most as we grow older with HIV. Through this initiative, many women have received the training and earlier this year we completed another training for a cohort of women to continue with the work.
It has been an honour to meet other women who are passionate about women and HIV and to have the opportunity to be able to continue to bring hope to other women, which is precisely why I continue to do the work that I do. I absolutely love it and hope that women can be encouraged to move from surviving to living and thriving even with a diagnosis of HIV.