Iain’s Story


Iain, Volunteer and Peer Support Coordinator at Waverley Care, tells about his life-changing journey since receiving a late HIV diagnosis 12 years ago.

Having your family summoned to your hospital bedside because you may not make it through the night was life-changing….and for me, it’s been a rollercoaster of a journey since that day 12 years ago. Waverley Care has provided me with much needed support and empowerment.

“Back in 2011, I started feeling ‘flu-ish’, and at a concert a couple of days later, I collapsed, remembered nothing until waking up in hospital a few days later. I was told that I had ‘some sort of brain infection’ which turned out to be meningitis, and I spent two weeks in isolation on an infectious diseases ward. After some time, an HIV test was carried out and it came back positive. This was what I later discovered was known as ‘a late diagnosis’, meaning my immune system was very weak which permitted the meningitis to take hold. As a result, I lost much of my hearing permanently, lost my speech temporarily, and had to use walking sticks for the following 12 months. One of the hardest barriers was the stigma of HIV and the devastating effect that had.

As with many HIV diagnoses, mine was poorly handled and I was told that I would be referred to my local sexual health clinic and before I knew it, I was left alone with no information or support and a mind racing with horror stories.

When I was seen at the local sexual health clinic several weeks later, I was immediately put on treatment, however there was no support available in the way of groups or peer support and it was an incredibly lonely journey. I felt very unwell and experienced intense and vivid nightmares which left me drained physically and emotionally. I was afraid to go to sleep.

One of the hardest barriers was the stigma of HIV and the devastating effect that had. My relationship imploded and I was rejected by almost all my friends, cutting me off through fear and ignorance and forcing me to move away to a different part of the country to feel safer with a ‘fresh’ start.

The effect on my mental health was huge and I entered a very dark place of depression, suicidal tendencies and fear, which lasted several years.

As with all rollercoasters, there are ups as well as downs, and in 2017, my HIV consultant suggested I get involved in activism as a way of combating the isolation. Attending that first group meeting was a revelation – after six years of isolation and having never met anyone else living with HIV, I walked into a room and met a group of other people who were all like me, living with HIV!

I felt welcomed, supported and most importantly I felt NORMAL, able to share experiences and understand that I was not alone!

I have come a long way on my journey and hope to do so much more to ensure we all live well with acceptance and dignity with HIV – so watch this space!”

From then to now

From then to now

Iain first joined Waverley Care in 2019 as a volunteer, undertaking a variety of roles ranging from peer mentoring to bucket shaking and engaging with crowds at the Edinburgh Festival. In August 2023, Iain began his role as Volunteer and Peer Support Coordinator, becoming a true inspiration and role model for many of our staff. He also founded The Borders Positive Forum in 2018 to represent individuals living with HIV in the Scottish Borders.

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