Pat’s story

"A lot of my job was teaching others about the reality of HIV, as well as caring for people and families who were impacted by HIV."

“I initially started looking after people with HIV the 80s. At that point, HIV was just starting to take off. In 1998 there were less than 400 patients when we moved from Ruchill to the Brownlee Centre at Gartnavel. When more asylum seekers came to Glasgow, we cared for people coming from different countries, who had different attitudes about HIV. They were usually wrapped up with cultural or religious stigmas.

Some of the people had horrendous times going to other services. They were so wrapped around stigma about their diagnosis. I remember when a guy who was HIV positive went to another service within the NHS and a healthcare professional put a glove on his hand before connecting his finger to the machine to take his oxygen levels. A lot of my job was teaching others about the reality of HIV, as well as caring for people and families who were impacted by HIV, and I was always quite passionate about this.

Unfortunately, because of the time, a lot of our patients were dying, and we were at funerals every other week. That’s just how it was before proper medication came about. It was just terrifying. There wasn’t a lot of knowledge at that point and so many people were alone. I remember sitting in someone’s room who was terminal doing my paperwork just so they had someone to sit with them.

Up until I retired two years ago, if I was dealing with someone who’d just been diagnosed, I used to say to them ‘take a step back, and get your own head sorted out before you start telling everybody, because you’ll be better able to deal with the reactions you get from others’. I know some folk who have been HIV positive for years and haven’t told anyone. It’s not like telling people you’ve got cancer, where you get all the sympathy in the world. I think when people are diagnosed with HIV, people immediately have this stigma about it. Adding the sexual stigma on top of an HIV diagnosis makes it such a shrouded topic and nobody wants to face it.

There were loads of side effects from HIV but also a lot of the medications they were using back in the day were causing some of the major side effects people were dealing with. Things like fat loss in people’s face and buttocks, there were a lot of people who had body consciousness issues because of the medication they were on. A lot of them were getting transplants, or getting fillers and stuff, so one of my colleagues and I went to learn to do fillers. Everyone deserves to feel confident in their body.

It’s important if you’re newly diagnosed to speak to someone who understands and who has been through the same thing. A lot of people found it difficult to navigate the NHS system, so it’s good to have that shared experience support. For staff members supporting people, it’s important to separate things. I would go home and there was my personal life and over here was my work life, you mentally have to separate yourself from it. You have to know that you’ve given people the best care you could and not take it home.

For someone newly diagnosed, I would say it’s no different from any other long term condition. It’s now treatable and with the introduction of U=U it’s a totally different thing we’re talking about, HIV now compared to HIV in the 80s and 90s.”

Pat’s story is part of the H is for Human series, in collaboration with the Terrence Higgins Trust, sharing stories of strength, courage and hope from four decades of HIV in Scotland.

For more information on Terrence Higgins Trust and to learn about the work they do, follow this link.

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