Richard on being HIV positive and breaking down stigma

‘I had a test and was very cruelly told, “yes you do have it”. I was not given a cup of tea or biscuit or offered any sort of comfort like that. The doctor passed me some pills and said that I’ll be on them for the rest of my life. And that was that.’

This is how local resident Richard Smith (not his real last name) was first told he was HIV positive 24 years ago.

When Smith was diagnosed in 1996, he was one of 5.8 million people who were infected with HIV across the world. With over 100,000 people in the UK currently living with the virus, how have things moved on?

Now 67 years old, he speaks to us about his diagnosis, the consequences of what happens when the institutions that are supposed to be looking after us fail (whether due to budget cuts or systemic bias), and continuing to raise awareness of HIV.

He is an open book; he speaks frankly about the 24 years navigating life as a HIV- positive, gay man. He grew up in Ipswich in the east of England and his family were accepting of his sexuality but it was a small town in the 60s and news spread fast.

‘I ran away because I felt like I was an embarrassment to my family once news got out, even though they weren’t embarrassed at all.’

He settled amid the hustle and bustle of London working in the hospitality sector. Here, he could live his life with some privacy.

‘My sexuality is private,’ he says. ‘as are my relationships. I never went to LGBTQ meetings or gay clubs or anything like that. It isn’t about shame, it’s just that I see anyone’s relationships as their own business.’

Eventually, in the autumn of 1996, he was heralded back to Ipswich after his father fell ill. Around this time, Smith was noticing he was getting sick.

‘I wanted to move back to take care of him, but I became so ill I just lay on my couch and didn’t move for three months because I had all sorts of illnesses that come as a consequence of having HIV.’ Often, the first symptoms of infection are synonymous with a bout of flu.

He was officially diagnosed shortly after, and although treatment had improved in the late 1990s since its global spread in the 1980s, the disease carried (and still does carry) social stigma, in part due to its prevalence in the LGBTQ + community. Unlike today, the topic of HIV was not openly discussed, either classrooms or in social situations.

‘My doctor mentioned my symptoms matched with HIV and I didn’t even know what it was. It was just not something talked about in general society.’ says Smith.

‘I had a test and was very cruelly told, “yes you do have it”. I was not given a cup of tea or biscuit or offered any sort of comfort like that. The doctor passed me some pills and said that I’ll be on them for the rest of my life. And that was that.’

The lack of holistic, emotion-based care and the importance of providing it will come to shape Smith’s mission in life. But in that bleak January winter of 1997, he returned to London, not knowing how long he may have left to live. He describes this period as existing in an extended period of being in shock.

‘I hung around until May next year basically waiting to die.’ He recalls a moment those emotional barriers broke, at a counselling session.

‘[Counselling] was horrific because everything just came out,’ he says. ‘When I saw a counsellor for the first time, I just cried for an entire hour.’

Richard Smith now is an open book, speaking of these experiences frankly, with honesty and humour, even through the darkest chapters. ‘This is what life is, you just need to learn to live,’ he says.

But this acceptance came at the end of a long journey.

As he was living in Tower Hamlets at this time, his nurse recommended Positive East, the largest charity providing physical and emotional support for those diagnosed with HIV in the East End. This organisation would end up playing a significant role in his life.

Luckily, his condition would improve over the next few years. However, the HIV virus’ relentless attack on the immune system can leave people vulnerable to a host of other medical vulnerabilities. Smith now lives with neuropathy, a type of nerve damage that can cause chronic pain, and has limited mobility as a result.

He also developed bowel cancer. Although there is no way to tell if his cancer was directly caused by his HIV status, it is one of the diseases you have a notably higher risk of developing thanks to the virus’ destruction of white blood cells that guards the body against potentially malignant entities.

‘I was on holiday with my boyfriend in Thailand when I found out, but I had lost my passport.’

At this point, he did not have a place to live in the UK, yet he went back home with optimism.

‘I assumed there would be support, that I would have access to some kind of accommodation.’

But when he reached Tower Hamlets, where he had settled after his diagnosis in 1996, he found out he needed to show some form of photographic ID in order to be assigned temporary accommodation.

So until his sister from Ipswich could send him identification in place of his passport, he slept on the streets for a few nights. ‘It would get cold during the night so I would go to sleep during the day, when it was warm and walk around at night to keep warm.’

He did eventually gain access to temporary shelter on Parnell Road.

Throughout this struggle with housing, he was still being treated for cancer, and yet again, Smith found himself on the end of a healthcare system that offered medical treatment, but according to him, lacked a comprehensive support system.

‘I had an operation scheduled to remove the cancer in the morning, but I had to wait until the evening because there was such a huge backlog of emergencies. Then I assumed I would be given bed rest. But they had a whole waiting room of patients so I had to leave the next day.’

He survived these experiences, and has now found a permanent home in Bromley-by- Bow.

He spends his time volunteering with Positive East’s extensive Peers Support programme as a Peer Mentor, using the many experiences of his life to provide emotional and practical support to help others in the community to live well with HIV.

‘People come in and they’ll be panicking. So I’ll tell them, we can help you but first you need to get registered at so-and-so hospital, and these are the forms you need to fill if you need help with housing.’

As someone who has also gone through the trauma this virus can bring on multiple fronts, both due to the social stigma and the constant threat to one’s life, he helps support those who have been newly diagnosed.

‘I sometimes see people pacing outside the clinic. They’ll sort of walk towards the front door then walk out again. If I see them walking around, I’ll come out and ask if they want to come in. Some come in, some run away. But it’s about accepting that they need help, and the first step towards that is walking through those doors.’

Treatment for the disease has progressed; nowadays, it is rare for those diagnosed with HIV to develop AIDS, the lethal condition caused by the infection. But HIV is still considered to be a pandemic, with an estimated 37.9 million people living with the virus, with approximately 100,000 cases in the UK.

Positive East provides assistance and long term care for people with HIV/AIDS.

If you are interested in stories about extraordinary local voices, you might be interested in reading about Daniella on what it is like to be a trans woman in Tower Hamlets.