“Back in 2011, I started feeling ‘flu-ish’, and at a concert a couple of days later, I collapsed, remembered nothing until waking up in hospital a few days later. I was told that I had ‘some sort of brain infection’ which turned out to be meningitis, and I spent two weeks in isolation on an infectious diseases ward. After some time, an HIV test was carried out and it came back positive. This was what I later discovered was known as ‘a late diagnosis’, meaning my immune system was very weak which permitted the meningitis to take hold. As a result, I lost much of my hearing permanently, lost my speech temporarily, and had to use walking sticks for the following 12 months. One of the hardest barriers was the stigma of HIV and the devastating effect that had.
As with many HIV diagnoses, mine was poorly handled and I was told that I would be referred to my local sexual health clinic and before I knew it, I was left alone with no information or support and a mind racing with horror stories.
When I was seen at the local sexual health clinic several weeks later, I was immediately put on treatment, however there was no support available in the way of groups or peer support and it was an incredibly lonely journey. I felt very unwell and experienced intense and vivid nightmares which left me drained physically and emotionally. I was afraid to go to sleep.
One of the hardest barriers was the stigma of HIV and the devastating effect that had. My relationship imploded and I was rejected by almost all my friends, cutting me off through fear and ignorance and forcing me to move away to a different part of the country to feel safer with a ‘fresh’ start.
The effect on my mental health was huge and I entered a very dark place of depression, suicidal tendencies and fear, which lasted several years.
As with all rollercoasters, there are ups as well as downs, and in 2017, my HIV consultant suggested I get involved in activism as a way of combating the isolation. Attending that first group meeting was a revelation – after six years of isolation and having never met anyone else living with HIV, I walked into a room and met a group of other people who were all like me, living with HIV!
I felt welcomed, supported and most importantly I felt NORMAL, able to share experiences and understand that I was not alone!
I have come a long way on my journey and hope to do so much more to ensure we all live well with acceptance and dignity with HIV – so watch this space!”