In this story: Services and Support /

"That's my favourite part about my job - seeing people develop themselves, learn new skills, thrive and benefit from support of their peers"

“I come from a corporate background but after 15 years I decided that I didn’t want to continue in that kind of environment. So I started applying for roles in the third sector, and I was delighted to land one with Terrence Higgins Trust. That was my first ‘real’ interaction that I knew of, with HIV. I recall someone I used to work with asked, ‘are you not frightened you’re going to catch it?’ when I was entering into this role. And that was only 7 years ago! I couldn’t believe someone in their 30s had that kind of assumption about HIV.

Sadly, that view and stigma persists even now, but I’m a strong, loud ally to eradicate those views – breaking stigma is a big part of our role at Terrence Higgins Trust. The reality is, people don’t know what they don’t know, so it’s about getting the message out there and teaching people the facts.

A lot of the people we support still, to this day, often face stigma in medical settings. This can have a devastating impact on them. You hear it all the time, people in hospital with their HIV status displayed at the end of the bed, ‘double gloving’ or being told they have to attend the very last dentist appointments of the day. Things like that still happen unfortunately.

Although those attitudes must be challenged, not everyone has the strength to do that. There’s also a lot of self-stigma that comes with an HIV diagnosis, some people we support feel very anxious about disclosing their situation, but it’s important for them to know that you don’t need to disclose your status unless you want to.

Culture can also play a big role in how people feel about their diagnosis. I know a lot of people are indifferent about their status, they’re not ashamed of it, and are comfortable speaking about it. But in some cultures, like black African communities for example, it’s just not talked about – it’s hidden and feared. In Scotland, there are roughly 6,500 people living with HIV, which is not a massive number. There are some communities of people living with HIV that aren’t accessing or engaging with support or they’re lost in the system. I worry about those people.

The hardest part about my job is not being able to fix everything for the people we work with. I can only do what I can, and although we’re not mental health experts, that’s definitely something we regularly support with, because HIV has just as many mental health symptoms as it does physical.

Peer support isn’t for everyone, but there might just be one person that you meet that you can connect with, and that can make all the difference to your life. It’s so good just to see people with HIV who are living full and happy lives, which can be encouraging and enabling for others. We absolutely know that getting an HIV diagnosis is terrifying for most people, especially when you don’t have the support of your family or friends, being able to speak to people who know what you’re going through can make a big difference.

That is my favourite part about my job – seeing people develop themselves, learn new skills, thrive and benefit from support of their peers. Getting people involved creates a ripple effect. If you get someone involved and they tell someone else about the work you’re doing, then they tell someone else, who tells someone else, and that’s what we need, to grow the knowledge around HIV. It’s empowering. The more we make it normal to talk about, the more normal it becomes for people to accept.

I consider myself very fortunate to be working for Terrence Higgins Trust, particularly on the Peer Support Scotland project. I love my job! Being able to support people living with HIV either one-to-one or in groups is really important. We might be supporting them to access other services including recovery groups, welfare rights or just simply offering a listening ear, which often helps someone the most. Terrence Higgins Trust has a huge amount of help and support to offer anyone living with or affected by HIV or Hep C.

Although it’s amazing to see how far we’ve come from the dark days of the 80’s and 90’s, we know HIV is no longer a death sentence, people can live well, U=U, excellent treatment and care, PReP and PeP, there is still a negative side of that, where some people think it’s gone away, and it hasn’t. It’s about striking that balance, educating and challenging misinformation, our recent anti-stigma campaign has done that. It’s opened up opportunities to have good conversations, for people to seek out more information about the virus, get tested and bring it to the forefront again.

I’m fortunate I get to be on here, on this journey making a difference where I can.”


Julie’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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