My HIV Journey: Rob's Story

I was only 10 years old when the first HIV diagnosis came about. That was 40 years ago, and getting such a diagnosis was viewed as a death sentence to almost anyone who received it. A few years later in 1987, the advert the government put out an ad of a tomb stone falling with the tag line “Don’t die of ignorance”. This not only affected me back then, but I believe the memory of these adverts still drives so much of the stigma felt by so many today.  

The way so many people (which was often gay men) who contracted the virus were treated back in the 80’s and 90’s was so horrific. To many today, it feels unbelievable that sick people could be treated like that in the UK, to which I am so glad Russell Davis wrote “It’s a Sin”, first aired on TV in 2021, to show a glimpse of what it was really like for those living with HIV back then.

When I was diagnosed with HIV, I really struggled to process the information, but I always went for my regular blood tests and when it was suggested by my HIV specialist doctor some years later, I started the anti-retroviral therapy (ART).  The main aim of ART was to help increase the CD4 count and suppress the viral load. Whilst this worked for me, and I kept taking the medication daily and going for my regular blood tests, I did not want to think about it or tell anyone about my HIV status, and I believed that it added to the reasons why I felt “dirty and unlovable”.

This lead to me self-medicating, increasing my alcohol and drug use, which up until then had been at a social level (albeit very social) which came to a point where I was intravenously using crystal meth along with a number of other substances to try and help me forget what I saw as my “dirty secret”.

Eventually my substance use became a bigger problem, outweighing any of the other issues I was experiencing and trying to suppress. However with help from Turning Point, I was able to get help and make some impactful changes to become sober and drug free.  

Last year, I’ve just celebrated my 10 year anniversary of being drug and alcohol free.  

Getting sober after hitting my personal rock bottom gave me the motivation to move forward, and allowed me the calm headspace to work on the issues I had been carrying around for years, initially through step work within the 12 Step Rooms with my sponsor, but then with a therapist to go more into depth.

My desire to learn and understand more about myself and my experiences lead me back into formal education, where I did a Master’s Degree in Addiction Psychology and Counselling. Following achieving this, I have consistently been trying to understand more about addiction (with a focus on Chemsex specifically) both personally and in the wider context. I believe one of the big things that has helped me is my journey in supporting others.

I still remember when I first joined Turning Point, I had been a Peer Mentor for about 18 months helping run groups and reintroducing structure into my life but on my appointment as a paid support worker it was during my initial medical phone consultation they asked about my medical history. For me, saying out loud about needing to go for blood tests every 6 months for my HIV was a REALLY BIG deal to me, and the anxiety of having shared this information stayed with me for days, maybe weeks afterwards.

I remember about 8 years ago when the government finally supported U=U, (Undetectable equals Untransmittable), and knowing I could not pass this virus on to anyone else as long as I took my medication really helped me accept my diagnosis. Along with therapy, this really helped me learn to love myself again and not see myself as I had previously, as ‘dirty or unlovable’, but instead fully believing that I was so much more than just my HIV diagnosis. 

Eventually I became more comfortable discussing my HIV status where and when I felt it was appropriate, and begun using my experiences to challenge and contest modern-day HIV stigma. Instances of this included when, at the beginning of the COVID-19 pandemic, my GP sent me a letter stating those living with HIV should be in the ‘high-risk’ category. Being in this category would have meant I’d be unable to continue working in a face-to-face environment, despite being classed as a key worker, something that I didn’t want to do as I wanted to be there for my team. I highlighted that I was on medication that worked well suppressing my viral load so did not believe it should affect me any more than anyone else who wasn’t living with HIV. I was able to continue working throughout the lockdown, going into the office and leading my and the wider Turning Point team throughout a very trying time.

There is currently an aim around the world to end the epidemic of HIV/AIDS by 2030. In one report it is said that this will be achieved when the number of new HIV infections and AIDS related deaths decline by 90% between 2010 and 2030. The main aim is to reduce the number to such a low figure that it would in essence end AIDS as a public health threat. 

In 2019 in the UK, the figures achieved were 94% of people believed to be living with HIV were diagnosed and knew diagnosis, 98% of those diagnoses were on treatment and of those 97% had an undetectable viral load way above the global targets.  

So whilst the figures look promising and the medication has improved, why do I still encounter so many people who experience issues because of their HIV diagnosis?  

I think the biggest issue here is stigma, and this isn’t helped by the lack of understanding about how much HIV has moved on since the early days of the Tomb Stone advert and many people of a certain age still have this as their only reference point for anything to do with HIV. There is also an aging HIV+ population who are more vulnerable to other illnesses (Cardiovascular disease, High blood pressure, Kidney disease, Type 2 diabetes, Osteoporosis, Dementia and other neuro-cognitive impairments), they are disproportionately affected by financial issues. They are in “Unchartered Territory” being the first people who have HIV to age and face many comorbidities which can cause those living with HIV heightened anxiety but also leave health care professionals supporting them a little confused and lost as what best to do.  

I think for me the most important thing to do is to keep talking; about my diagnosis and with others about theirs, how it is or may affect us and how best to deal with these concerns and what support would be most appropriate. If there is any way we can support ourselves then great, but if that isn’t possible, is wider HIV+ peer support possible? If not, how can we best get the support we want and deserve from more formal avenues like the government? 
 
I think positive portrayals on TV and film humanise us and will also help further to take away the stigma so many HIV positive people carry/experience.  

For myself, it is up to me to not feel stigmatised by my diagnosis and regardless of what anyone does or says, I do not have to let it negatively affect me.  

I am so much more than my HIV+ diagnosis.