From Silvia Petretti, Positively UK’s CEO
One of the most powerful feelings I have been forced to face again during this new pandemic is the ‘fear of contagion’; the sense that our bodies are potentially contaminated, and dangerous.
As a woman with HIV this has brought back the dark emotions of the days of my own diagnosis in the late 90’s. My body had become my enemy, and I felt an irrational sense of disgust towards myself, as I imagined the virus crawling inside me. Especially the first few weeks after my diagnosis, I was scared for my family, as I was living with my dad and 97 years old grandmother. I spent weeks locked in my room crying, and disinfecting the bathroom every time I used it! I did not believe yet that you cannot pass HIV via toilets! I remember recoiling from hugging my best friend, when she told me she was pregnant.
I have had very similar emotions in the past few weeks, for example when during my daily walk in my neighbourhood I met an old friend by chance: my first instinct was to hug them and deposit two big kisses on both cheeks, Italian style…and then I have frozen, in a wave of anxiety and embarrassment.
There are many similarities between the onset of the HIV/AIDS pandemic and the COVID pandemic. Like in the early days of HIV/AIDS we are now confronting ourselves with fear of getting physically close to others, we are also seeing an abundance of confusing and conflicting information. We still don’t have an effective prevention, or treatment for COVID, just like we did not have it for HIV. The response of our political leaders has been insufficient and at times baffling, just as it was at the beginning of the HIV/AIDS pandemic.
As people with HIV we have a long history of living with uncertainty and facing the rawest feelings of vulnerability. Many of us have confronted illness and death, many of us had to bury our loved ones, who often died young and abandoned by their families. We had to live under the burden of stigma and the shadow of silence, with the consequent social isolation.
But through all the challenges, loss and grief, many of us have developed a profound empathy and connection to each other, together we built a very diverse community of people with HIV. As a response to the inaction and inadequacy of the response of those in power, many of us also developed a healthy dose of anger. Through those emotions we built personal resilience and mobilised as a community of activists, who steered change. We fought for the development of HIV treatment, and access to support and care for all, which, by the way, it still is not a reality for many at a global level.
One of the biggest questions in my mind at the moment is: how can we use what we know as a community of people with HIV to face this crisis again?
What resources, services, networks do we need to ensure that we survive and succeed? And that when there is a cure and/or a vaccine for COVID, it will be available and accessible to all who need it?
How can we make sure that during the journey towards effective cure and prevention of COVID, none is left behind?
Whilst COVID and HIV continue, how can we reach and support those who are made most vulnerable and marginalised by this crisis? I say ‘made most vulnerable’ because it is a multiplication of social factors such as: poverty, race, gender, sexuality, and poor mental and physical health etc., compounded by the COVID and HIV, that causes and increases vulnerability, not some kind of weaker psychological or racial trait. Vulnerability is the consequence of social and economic forces influenced by political decisions.
Positively UK will hold a Service Users Forum on 10 June on Zoom. We want to hear the voices of people with HIV, so that together we can begin to address some of those questions, and understand what services Positively UK should provide at this critical time.
To join our service forum email firstname.lastname@example.org