Steph* was seven when she first found out she was living with HIV. Her journey to adulthood has had plenty of ups and downs, but now her focus is on sharing her experience to help others. We caught up with her to hear her story.
When did you first find out you were living with HIV?
I was about 7 years old. I was watching TV with my mum and dad and there was a programme about young children living with HIV.
In my memory, that’s when mum told me, but apparently I asked if I was the same as them. Between hospital appointments and medication, I must have subconsciously figured it out.
Over the next few hours she got out all these different books about HIV and spoke to me about how it had happened.
I was born in Romania in the early 90s and, at the time, infants who were unwell were given blood transfusions because the authorities thought that it would make us healthier.
Unfortunately, a lot of the donated blood was infected with HIV and I was one of the children affected.
Can you tell us about how you found your way to Scotland?
At the time a lot of poor families were encouraged to put their children into orphanages as they couldn’t afford to look after them, and basically that’s what happened with me.
My mum was a newly qualified nurse and was in Romania as part of a charity effort to help people. After a spell in my orphanage, she’d travelled back to Scotland for Christmas. When she came back to Romania, she said I was the only child that recognised her and was excited to see her. And she said from that point on, she wanted to adopt me.
She was single at the time and living at home. Imagine phoning your mum and dad saying ‘oh, by the way, I might bring home a child, and not just any child, one living with HIV’. Was she brave or mad? I still don’t know!
She married my dad a few years later, they’d grown up together and when I was about 5 or 6, he legally adopted me.
Do you remember how you felt when you first found out about living with HIV?
I remember not caring at all! I was seven and at that age you don’t understand things. The next day I told a couple of friends at school and they were like ‘OK, that’s who you are’. But when I told my parents that I’d told friends, they were concerned.
I was so lucky growing up, all my friends knew about it and we talked. As I was learning about the condition, they learned along with me. I’m still friends with a lot of them.
I think a lot of people knew but they were never horrible or malicious.
What have been the main challenges?
I think it goes in stages, so, when I was younger it was fine, and now that I’m in my late 20s, it has settled down again. It was the time in the middle, the teenage years, when it all went wrong.
At that age, everything’s complicated enough but when you’ve got HIV, it’s a whole other issue. I was getting older, getting into relationships and not knowing how to tell potential partners about it. I was also feeling side effects from medication so I stopped taking it for a while.
As I got older, I was also learning that HIV was not as accepted as I thought it was outside the safe little bubble that my parents had created for me. Realising that I could potentially get rejected, or that people might want to hurt me, or my family, was a scary concept for a 16-year old to try and get her head around.
When did you first come into contact with Waverley Care?
It would have been when I was about 15. I was attending the Western General at that point, and my mum had asked the staff about support because she was concerned about how I was coping. She was put in touch with Waverley Care.
They’ve been there for everything. They’ve kept me above water numerous times, supporting me to appointments and providing so much emotional support it’s unbelievable.
One part that sticks out has been the Poz Youth group. There I met other young adults and would go away on activities which was actually very therapeutic. You were in a safe group with people the same as you.
Waverley Care and Milestone have been a huge support, along with the Western General and organisations like Positive Help and the Children’s HIV Association. I’ve been very lucky to have a lot of support around me.
Two years ago, you were very unwell – can you tell us what had happened?
I was on a downward spiral. A couple of failed relationships had taken their toll on me and I hadn’t been taking my medication. Eventually my body was saying enough is enough.
It was my sisters that inspired me to turn things around. They’re at an age where I’m almost like an aunty as well as a sister.
I hated the thought of them growing up thinking I didn’t love them enough to try and fight. There was no way I could have done that. I had to put my demons aside so I could focus on getting better.
You recently spoke about your experience in the Scottish Parliament for World AIDS Day. What was the main message you wanted to get across?
It was a fantastic experience to be a part of, listening to people’s stories and their views on stigma. I guess the message I wanted to put across was about the mental health side of things.
That’s something I’ve always struggled with – accepting HIV, feeling mentally strong enough to take the medication and carry on a fairly normal life.
I feel that we’ve done very well with medical research, and treatments are incredible, but the struggle I felt growing up was when I’d go to the GP and say ‘I’m need help’. Simply saying ‘here’s the tablet, off you go’, that’s never going to be enough.
You’re a keen photographer. Can you tell us what got you interested?
My mum always liked photography and takes incredible pictures so growing up that was something I admired.
Even when I was really ill and in a difficult place photography was something that always made me happy. I’ve always got a camera in my hand. Even when I was in hospital, I was able to find inspiration. I think you can always create something beautiful, even in your darkest moments.
With support from the Princes Trust, I signed up for a photography course and learned a lot. Now that I’ve got the basics, I’m trying to keep learning by practicing and I’m taking photos pretty much every single day.
What do you do in your spare time?
I’d love to say I do all these cool extreme sports but I’m actually really boring!
I’m a bit of a crazy cat lady. I’ve got a cute kitten and she’s my everything. I’m a total book worm as well and usually have a few non-fiction books on the go.
Over the last few years I’ve had the opportunity to take some time, try new things and learn to love myself again. It’s helped me to come to terms with my positive status and realise that it doesn’t need to get in the way of my life.
Who inspires you?
A few years ago, I saw a quote saying ‘Be the hero that you need’ and I thought OK. I’ll take each day, trying to be better than I was the day before. Now I have the opportunity to share my story and I hope that can help to inspire others who have gone through similar thing.
* Name has been changed to protect individual’s privacy.