This is the experience of Pete, a man with HIV in Scotland, told in his own words. Pete was diagnosed early in 2014 and here he talks about how his life has changed and some of the challenges he has faced - from welfare issues to having multiple health issues - and why he feels it’s so important that NHS staff are educated about HIV.
This story is only one of many that has been shared with us and it does not represent the experiences of all people living with HIV. If you have a different story, we'd like to hear it - please do get in touch.
“I became unwell February last year and just woke up one day, didn’t feel right and over the space of a week and a half just became more and more unwell. By the end of the second week I was in bed, I couldn’t move, with extreme muscle pain, swollen muscles, I couldn’t do anything and it was then that the GP tested me. A few days later my partner and I went in for the results. All I remember is the GP saying to me “I am sorry to say you’ve got HIV”. And as for the rest.... I don’t remember anything.
“I knew a bit about HIV, but I wasn’t really knowledgeable. My first thought was I am going to die, and then I was like, I am going to get AIDS. I know differently now, but that was what was in my head at that time. They actually told me I had an 80% chance of dying at that point – though in the end I was started on medication right away and became undetectable [when HIV is suppressed to the point that it is no longer detectable in the blood] within three weeks.
How my life has changed
“Since then, my life’s changed in lots of ways. I have to be more careful with what I am doing obviously. Some smaller things, even holidays and getting travel insurance are a nightmare.
“My medication seems to be working, so despite the fact that I am suffering all the side effects from it they won’t change it. I take my meds three times a day, but don’t ask me the names as they confuse the hell out of me. The side effects are mostly what I call my morning sickness - I wake up every morning and the first place I need to go is the toilet to throw up. I get the odd day where I have the diarrhoea as well and there is the odd day when I just feel gubbed, absolutely exhausted.
Fighting to get Disability Living Allowance
“I was working up until I became unwell, and I’ve got some ongoing issues and some other conditions to this day so that is why I still can’t work. For a year I had to fight to get Disability Living Allowance, which was really stressful. The doctor that assessed me didn’t even take note of my HIV drugs. ATOS declared me fit to work, even though I couldn’t walk the length of myself.
“I had to appeal, I had to then re-appeal, I then wrote to an MP, and then it was taken to tribunal, and when they saw me stagger in with my walking stick they agreed I needed Disability Living Allowance. I never even got asked a question. They couldn’t believe what ATOS had put on the forms.
“Sometimes I struggle to cope with having several health issues at once. There’s days – at least three, sometimes four out of every week - where I just want to cry. Of course being the man that I am I don’t do it in front of people. There’s days where I just want to be left alone and I just sit in a wee world of my own. God bless my partner, as I don’t know how he copes with it. Today’s a good day – there’s lots when I don’t leave the house and it gets me really, really down.
‘We have to improve HIV education for NHS staff’
“I’ve experienced some stigma about HIV within the NHS – staff wouldn’t do certain tests for other issues I have because I have HIV. Even though they take general precautions anyway and knew I was undetectable and therefore the chance of them catching it was very remote (even my consultant and specialist nurse told them this) – because of some outdated recommendations we were told that’s just the way it is.
“We’ve got to prioritise education within the NHS. Apart from specialists, nurses in particular do not know enough about HIV and the complexities of the medication, as well as a lot of doctors. As it stands they don’t realise that they are more of a risk to me than I am to them.
‘I like to help other people’
"I’ve got involved now with a project that means I’m talking more to other people with HIV. Through it I’ve got a better understanding of what other people go through, what they suffer, what stigma they are getting, what prejudices. I actually think of myself as being very, very lucky – I have a fantastic GP and she’s more than helpful, whereas somebody else told us about their GP refusing to do simple medicals for them because of HIV.
"It’s good that I’m at the stage now that I can be a support to other people. I find I speak up a bit more and kind of give them advice and tell them things really aren’t always bad, what to expect, how I’ve dealt with similar things. Because I like to help other people, and to help myself at the same time too, I guess."
HIV Scotland is collecting the experiences and stories - like this one - of people living with and at risk of HIV from across Scotland, to inform our work and to raise awareness about the reality of life with HIV.
We take confidentiality seriously and do not share any information without express permission from the individuals we talk to.
If you would like to share your story, or if you have questions about living with HIV, please do contact us.