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Alan, 68, is a community services manager at an HIV support organisation in Brighton, and is one of the ‘faces’ of the National AIDS Trust website.
“I wanted to take part in the photoshoot for National AIDS Trust because, about nine or 10 years ago – having lived with HIV for about 21 years – I finally cracked my own self-stigma and came out of hiding myself, I came screaming out of my HIV closet.
Before that, I was heading down a path towards a major breakdown. After my diagnosis I pretty much hid away. I was in a relationship that gave me the cover I needed not to have to confront my status. I was really petrified that people would find out about it. So I beat myself up a lot, and when my relationship broke down I could only see darkness ahead of me.
During a visit to my clinic, I broke down and as a result they put me in touch with an HIV psychologist, and he helped me hugely, along with my HIV consultant.
I gained confidence from speaking to groups of GPs who were being educated about HIV, and from that I was part of a patient panel at Sussex University talking to medical students about living with HIV. Some time after that, it was suggested that I consider training to become an HIV peer mentor. I did the training and began mentoring.
So over a period of two or three years my life changed completely, and I had faced it and dealt with it (to an extent that we ever fully deal with it).
I even appeared on the local BBC, talking about a stigma campaign I had worked on.
Despite my initial reservations around talking about living with HIV on television, the reception I got from neighbours and people that knew me was friendly and positive. “I saw you on telly,” people said, with a smile. One neighbour even asked me, in a friendly way, to explain HIV to him.
From that experience, I told myself that if you can prove to yourself just once that you can conquer self-stigma, it’s like opening a door. Then that door stays open for you. Whether you choose to go in and out of it or not, it’s up to you.
Since then I have developed a passion for supporting people living with HIV. I am angered by the injustice and inequality that we experience as a cohort. So anything that I can do to raise awareness, I will do.
I do this because I found my voice, and I will use my voice for those who are not yet ready to use their own voices.
Stigma is at the root of everything, self-stigma, institutional stigma and more.
That’s our real battle.
If I could tell people anything about HIV it would be this: if you haven’t been tested, get tested. But take note, if you are not living with HIV, you’re not going to get it from me! You’re not going to get it from any of us.
Stop stigmatising us, stop picking us out, stop pointing at us. Either support us or leave us alone.
We need support because of what we have experienced for the last 40 years. We have people aging who get no recognition for their comorbidities, for the toxic medication, for the societal stigma they’ve experienced year after year.
Having to explain to people like the DWP every year or two that you’re living with a virus that affects your life on a daily basis, is simply exhausting and insulting to everything we have been through.
At work, my team of five and I are kept really busy. Referrals keep coming in, and it’s getting busier all the time. There are various reasons for this. Brighton has the oldest cohort of people living with HIV in Europe, and as people get older, that throws up new challenges for their lives, both with HIV and with the economic crisis from the last couple of years, and also the Covid-19 pandemic is still causing issues .
More people are stepping forward and saying: actually, I do need some help now.
At the same time we are actively seeking out people in more rural areas, identifying those who are isolated. Areas with a very different demographic, people that have been hiding away for a long time, who actually do need support.
This is a really important time. All of us in the third sector are coming under increased financial pressure, and we’re in a battle to save the services that our clients need. Too many charities and too many hospices are closing or in danger of closing.
There are still so many issues in my clients’ lives relating to HIV that need to be investigated and resolved. Our services need to be protected and supported, especially if the powers that be are serious about the goal of zero transmissions by 2030.