I was diagnosed in May 2015, two and a half months after approaching my GP with five weeks of gastro issues, after having a flu in the January. I’d had a blood test and gave various samples; all returned no further action. Massive gap here for BBV testing, as this was in fact Sero conversion.
I visited a sexual health clinic in Birmingham, for no other reason than a routine sexual health check after the end of a relationship. I could still be undiagnosed today had I have not done that.
An HIV diagnosis was the last thing I expected!
My last education on HIV was 1993, I thought I was going to die along with being banished/stigmatised by friends and family. I told a few friends and they were super supportive but they also didn’t know much about HIV.
My first visit to Heartlands HIV Service was daunting, with most of the information given to me going over my head. Even though I was an early diagnosis with no damage to my immune system, my mental health took a turn for the worse and I retracted from my normal life. I was full of self-stigma and in fear of stigma from others. Telling my family was really hard, we cried, they hugged me and told me they were with me all the way.
When I met my consultant, I was an anxious, nervous and depressed mess, he always gave me his full attention and with his support I made it on to ART/meds by Jan 2016, with a full understanding of what being undetectable meant. Clinic was and still is a safe place to be HIV Positive without judgement.
However, the rest of Hospital/s and primary care not so much, the most stigma I have received has been through these types of services. Being undetectable means I am not a transmission risk to anyone and that I can’t pass on HIV to sexual partners…I have tested this and it works!! If I understand this why don’t other clinicians outside of HIV Services?
I attended a patient forum in clinic and met others living with HIV, this was a total turning point for me. I was so empowered by meeting others; we had all been through the same feelings, emotions, and several of the same symptoms. Why had we not met before to get through those early dark times?
Within a year I was Chair of the patient forum and started researching Peer Support. In 2020 Positive Peers, Birmingham was born, a group of people living with HIV who use their own experiences to support others. Nobody should feel shame, any type of stigma or isolation because of their HIV status. Funding for this type of support will always be essential as the mental impact of a HIV diagnosis is something you should not go through alone. I speak out about my HIV to educate and challenge stigma; it also let’s others living with HIV know that they are not alone.
I’ve volunteered for Saving Lives several times during Prides and HIV Testing Weeks, I’m passionate about HIV testing to prevent onward transmissions and late diagnosis and of course saving people’s lives!!
This year I took on the role of overseeing the social media for Birmingham AIDS and HIV Memorial. I’ve also had the opportunity to educate schools and community groups about HIV with the Cover Up project. The memorial has so many meanings but for me it means that living with HIV today means we will no longer live in the shadows of stigma and fear. My HIV doesn’t define me but it has enriched me in so many ways
