Monica’s story

"HIV is not just something from the past. We are still living with it, and we are still being stigmatised."

“When I was first diagnosed, my brain just stopped suddenly, and I thought to myself how will I cope with this? Do I really want to carry on living? But slowly, with the help of friends, I started to become aware of the virus. I lost a few ‘friends’ along the way, but my close group of friends and my dad were really amazing throughout it all. Because I was diagnosed at such a late stage, I was quite unwell, so it took me a while to get back up and recover from that. I had a lot of walls up at the start, and I didn’t want to be involved in any groups or anything like that. I lived in a small town in Portugal, and worked in the hospital I was diagnosed in, and I just had to get away from it all, and so I decided to come to a country where I could be normal, if you can call it that. When I first arrived in the UK, I didn’t know anybody, and barely spoke the language.

I think the hardest part about living with HIV for me has been relationships and knowing when to tell people. But it’s also allowed me to meet so many amazing people. It’s almost an unlikely family that you end up having, all from different backgrounds. It’s been such a learning process for me, but one I’m actually grateful for. When I finally reached a point where I felt I could come out about my HIV status, it was a huge pressure off me. It doesn’t mean the stigma, especially self-stigma, isn’t still there, but I’m so much more open, happier, and honestly relaxed, and I hope anyone going through this same thing can get to a place where they can be open about their status.

I’ve always been involved in some type of activism throughout my life, and in 2019, when I decided to come out as someone living with HIV, I thought ‘you know what? I need to do something about it’. Because HIV is not just something from the past. We are still living with it, and we are still being stigmatised.

It wasn’t until the pandemic that I decided to become involved directly in HIV activism. I started off with Peer Support Scotland through Terrence Higgins Trust and volunteering with Waverley Care and National AIDS Trust. The main reason for getting involved was because I was seeing very few women represented, it was as if we were forgotten. There seemed to be a bit more focus for minority and black African women living with HIV, but less for other women. I guess the support tended to be tailored for groups depending on how they became HIV positive, and white women didn’t fit the stereotypical idea of an HIV positive person. That’s still the first question I usually get asked is ‘how did I get it?’, because I’m not a gay man and I don’t look like a drug user. It used to trigger me quite a lot when people asked that, but now I answer it because I think it breaks down a lot of stigma and shows that anyone can become exposed to HIV.

There is no social situation, age or lifestyle that means you cannot catch HIV. Anyone can get it, and it only takes one time. It’s important to test regularly, even if you think you don’t fit the ‘requirements’. But that isn’t to scare anybody, because living with HIV is like living with anything else. It can be managed, and it’s not the end of your world.”

Monica’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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