my story -Diagnosed with hiv at 17
I was 17 years old in July 2014.
I was one of the 6,151 people told they have HIV in the UK that year, and one of the 80+ million people who have become infected with the virus since the epidemic began.
Diagnosed in a hospital clinic in my hometown in Cheshire, I remember the events leading up to it so clearly. I was so fearful something had come up after my first ever sexual health screen when I got a call from the nurse simply asking me to come back to the clinic. I was so young to know anything about HIV and what it meant for my life at the time.
Obviously I wouldn’t have been worried if I hadn’t made a mistake, I’m not perfect and no-one is. Protected sex is so important yet people don’t even realise how common STI’s and STD’s are. 1 in 20 sexually active gay & bisexual men have HIV in the UK. Rising to 1 in 8 gay & bisexual men in London? I certainly didn’t realise how common it was, I would most likely not have HIV if I was aware of that at 17.
After hearing my diagnosis, I told no one. The only one person I told was a casual partner, in fear that I put him at risk. He luckily got the all-clear, but it shows the risks of going untested. Apart from that, I didn’t tell anyone at all for 2 years. I had this shame in myself, this internalized stigma. I didn’t want to tell anyone else because I was so worried that I would be treated differently because of it. This feeling is not uncommon. A survey in 2015 of HIV+ people in the UK found that in the past year half of respondents felt feelings of shame or guilt because of their HIV status, 1 in 5 even felt suicidal.
During this time of secrecy, I would be anxious about many things that I did because of my condition. I was worried whenever I bled that I would be a risk to people around, even though these feelings were irrational I couldn’t help feeling ‘dirty’. I remember bleeding at my part-time job in college and a colleague joked “ah well as long as you’ve not got AIDS!”, which really didn’t help my mental health at the time. One thing many people do not understand is that AIDS is not the same as HIV. HIV is the virus itself, which can be treated with medication. AIDS is not often talked about medically in the UK anymore. AIDS is the condition to which HIV starts to seriously damage the immune system, and is common in the Global South in those who lack access to medication or testing facilities. 1 million people die of AIDS-related illnesses worldwide every year.
The HIV medication available for people is life-changing. I started medication around 6 months after my diagnosis. It meant that for many people living with HIV their viral load, the amount of HIV in the blood, can be suppressed to such an amount it can no longer be picked up in testing. An undetectable viral load is so important because it has this new meaning, that an undetectable viral loads means your HIV is un-transmittable to anyone else. This scientific discovery, led to the 2016 U=U campaign, that undetectable is un-transmittable, a fact that still -in 2018- many people don’t know.
So, being on medication meant I had an undetectable viral load, one that I have maintained to this day. Yet despite being un-transmittable, meeting new possible partners was still plagued with discrimination. I have on numerous occasions in the past been rejected because of my status, despite me still posing no threat whatsoever. This is common for many who are HIV+, with 1 in 5 HIV+ people in the UK reporting sexual rejection in the past year.
At the age of 19 - with some alcohol- I managed to tell my best friend about my status. This was a major turning point in my life, I had so much more confidence after I had spoken out to a friend for support. Actually being able to talk through the condition with someone and explain what it meant for my life made me so much more comfortable in even just saying the words: “I have HIV”. It was a massive weight of my shoulders and I am forever hugely grateful for having her to confide in.
From this, I dramatically changed my outlooks and my actions. I told close friends and finally plucked up the courage to tell my parents. This was such a scary task, having hidden my condition for so long. Thankfully, there was a warm welcome from people close to me, and showed me that people don’t treat you differently so long as they have the right information and the education is there. I was lucky in this, as only half of people living with HIV+ in the UK feel well supported when disclosing their status.
Since being open about my status, I realised that the best way to tackle the stigma around HIV that exists is to live my life as someone openly HIV+, who is not ashamed and open to discussing the reality of it. I felt drawn to be a HIV+ activist, speaking on behalf of the many HIV+ people who feel unable to be open about their status because of stigma and prejudice.
Within a matter of years I've gone from internalised shame and anguish to becoming an activist. I became the Men’s Welfare Officer for my universities LGBT society, disclosing my status to encourage testing for HIV Testing Week in 2016 and to challenge misconceptions. I then ‘went public’ on Facebook for World AIDs Day that year. I have since been heavily involved in activism and support, training to become a HIV Peer Mentor and heavily involved with Youth Stop AIDS, an amazing UK youth-led movement campaigning for a world without AIDS by 2030, lobbying government to improve their funding and political commitments for the epidemic. I met with the Minister of State for International Development, Alistair Burt in UK Parliament to talk about my own experiences with HIV to help influence their policy as part of the Youth Stop AIDS #itaintover campaign, an achievement I would never have imagined.
I am one of the lucky ones.
I am privileged to have been able to be so open about my HIV+ status with support from family and friends, despite my fear of doing so for so long. I am privileged that I can turn my status back around and use it as a tool to raise awareness. There so many out there who cannot be open and who face stigma and prejudice by those they love and wider society. So, each of us can do our bit for the millions of people around the world living with HIV by educating yourself, spreading the word, and fighting stigma wherever you can. We also have a crisis in testing, HIV is still an epidemic in the UK because not enough people are getting tested and are going undiagnosed. We can end this in the UK - but each part of our society needs to take the ongoing epidemic seriously, and people go and get tested. HIV can affect anyone, so it should matter to everyone.
Let’s stop the stigma surrounding HIV testing.
You can order a free -confidential- HIV test here
Author: Sam Andersen