In this story: Mental health / HIV / Isolation /

"I quickly realised that I wanted to be an advocate for others to ensure that no one was treated the same way I was."

“I was diagnosed with HIV in the early 80s in Italy. In fact, I was first told I had AIDS, not HIV, and I was very unfamiliar with it all at the time. I was only 21 and before that, my most traumatic experience was probably thinking my handbag didn’t match my shoes! It was really quite scary for me. I remember being undressed and all of my clothing was put in a big black bag with a sticker that said ‘INFECTIOUS’ on it. Doctors were wearing biohazard suits, and I was put in a room separated from everyone by a thick glass window. Doctors and nurses would be talking about me without acknowledging me being there, and it was really scary stuff. Up until that point, I had felt like I was in charge of what was happening to my life, and all of a sudden, I didn’t have a speaking voice. I felt invisible. I had doctors trying to sterilise me and make all these other decisions for me. The feelings of being invisible I think stayed with me for a long time after my very first experience at the hospital.

I was initially told that I had three months to live, and that was them being optimistic. I remember thinking I still had so many things I wanted to do. I made the decision on the way back from the hospital that I wanted to carry on my life as normally as possible. My normal at the time was studying at university, so my main goal at the time was to see if I could live to sit my next exam. And then maybe I can do the next one, which I did, and then I did another one and then another one, so then I started working on my dissertation. And then I started thinking ‘Okay, maybe I could actually graduate!’, which gave me the boost I needed to start thinking that each day was a new day, so let’s see what happens next. I think I just had an inner energy drive that kept me going.

It definitely felt more like I was dying with AIDS rather than living with HIV. I realised that a lot of my friends were dying, and you would hear about such and such being in hospital and dying, or leaving home and dying, things like that became very common. I found myself quite isolated, which was very sad. Doctors at the time were advising us not to go swimming in the sea because there was a risk we’d infect others, or don’t talk to people, don’t engage with people. We were always being labelled as infected, which made it easy to remain isolated. My family were amazing throughout all of this. We had a summer house by the sea that we would go to from spring until the end of summer, and my grandmother decided that we would have other people who were dying of AIDS come to the house, because their families and friends had rejected them. It was really special to me and to the people that came, to have that safe space where they felt loved and supported.

I quickly realised that I wanted to be an advocate for others to ensure that no one was treated the same way I was, not just people with HIV but anyone on the margins of society. I felt that studying human rights and international law was a good way to do this, and I started getting involved in lots of different campaigns and activism. One of my tutors approached me and asked if I wanted to work as an academic, which opened up a whole new world for me, because I was able to sit in the library with books that were not hurting me. All the words from books were magic, they were beautiful words coming my way, and it was a way I could do things for others. Working in academia really opened me up to so many different opportunities, and that’s how I ended up coming over to Scotland.

Something I’ve struggled with throughout the years was finding a community for myself, because I wasn’t a gay man, or a drug user in recovery, I was just a woman living with HIV. At the time I was diagnosed there nothing for me, and I really felt like I was fighting for a space. My HIV doctor, the one I had until the day he retired, told me early on that if I was open about my status, people wouldn’t like it, and it was moments like that which inspired me to do things for women living with HIV. I ended up setting up the very first newsletter for women living with HIV with financial help from the NHS, which really helped to snowball other routes of support for women in the HIV community. Over the years I’ve worked with so many amazing activists, some who aren’t here anymore, and I miss them tremendously.

I think the most important lesson I’ve learned is that when you’re going through a challenge in life, it’s what you tell yourself that counts. I don’t want to sound like I’m preaching to anyone, but I think that’s truly what makes the difference.”


Nicoletta’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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