A year with HIV: from diagnosis to chairing the Positive Persons' Forum

This is the experience of Michelle, a woman with HIV in Scotland, told in her own words. Michelle was diagnosed with HIV a year ago, and here she talks about her journey in that year – from diagnosis to chairing the 2015 Positive Persons’ Forum. The Forum is the annual event for people living with HIV in Scotland, to come together and set the agenda for change on policy issues 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.

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“Round about January time last year I ended up going into hospital because I had been unwell for a couple of months prior to it with flu type things and I had just been feeling generally run down. It got worse and I ended up in hospital.

“Eventually they did a blood test, and told me I had HIV. My feelings in the first few seconds were scary, and then I did quite quickly go into right, OK, what does that mean? I just wanted facts straight away. The doctor had a bunch of leaflets and different things, and I must admit they were really good. Very quickly she said and don’t worry you are not going to die, the medication is really good today, people can go on to have a life just the same as everyone else, that it doesn't mean your life is going to be short.

“Then she asked me if I wanted a wee bit of time on my own, and I said yes. So they left the room, said they’d be just outside if I needed them. I stayed in there for about half an hour, emptied the box of tissues. I just cried, it all came out, thinking about my family. I got a lot out of my system in that half an hour. Then I sort of got back to my, ‘right then, OK’ frame of mind - I very quickly accepted that I had HIV and focused on finding out what I could do to get better, stronger, healthier.

I was really determined, grateful to be alive

“I felt really determined: ‘I am going to get medicine, I am going to find out what I need to do to get stronger, because no matter what I have got to get myself into a good frame of mind and good health to be there for my family. Within a day or two I was actually feeling really grateful to still be alive.

“My first feelings were purely determination and being positive: I’m still here, I am still alive, and that is good thing. I very quickly tried to zone right into the positive stuff. I was gutted to find out I had HIV but relieved to know there is a lot that can be done about it and that I was going to be OK.

I felt empowered after the Positive Persons' Forum

“Three weeks after I left hospital, I went to the 2014 Positive Persons’ Forum. I just wanted to learn, to know everything I could. I was on a mission, and I was so hyped up and because I had all these feelings about ‘oh my god life is amazing and wonderful, and OK this has happened but I need to find out everything about it and that is what I am going to do’. I was determined, so I just kind of charged in and sat down and started talking to like people beside me.

“Maybe there was a bit of underlying fear that I need to know as much as I possibly can about this HIV in order to survive, and that feeling was so strong in me. That first forum was a blur to me, but, the connections I made were powerful. It had a great outcome, I really felt empowered after it. I felt again positive about stuff, and I was glad that I went along.

It was inspiring to be a part of

“So, a year later, February just gone, I was chairperson of the next Positive Persons’ Forum. It was something that I really wanted to do. Because I am quite newly diagnosed as well, I got a lot out of it and I felt really good being a part of it. I felt incredibly honoured and extremely positive about it all, and I felt so happy to be there with everyone and to be around so many people that were just like to me, these amazing wonderful beautiful people, all in the same room together, with so many different ideas and views and opinions. I found it incredibly inspiring and it was just lovely to be a part of it all, to all be there together and to get these ideas. It was really powerful and I loved it.

“And I felt after it I was just really happy. I know I definitely want to do something like that again. It showed me how much I loved being involved in that type of thing and listening to everyone else.
“I am looking to join the HIV Scotland positive speakers program and different things like that and go to activism seminars and learn more. That is what I am looking forward to, getting more involved with all the other things that are out there.

“I believe that I could be able to speak out about HIV and demonstrate to other people: no, don’t judge someone, if you don’t know about something educate yourself and listen to a positive person telling you about who they are. See them as another human being, not just as somebody with HIV. Because we are the same people, it is just we have HIV.”

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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.