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  • Karl


Updated: Mar 2, 2022

My name is Karl and In 2013 I was diagnosed as being HIV positive, and minus the seroconversion illness (when your body fights at the virus as it enters your body), I suffered the two weeks before diagnosis. It came totally out of the blue and totally floored me. The first few weeks were about getting better physically and beginning to accept and to come to terms with it all. I remember early on thinking “I can let this take over me or it can be a part of me and me not be defined by it.”

In that first year I had amazing medical support to ensure I was well and fantastic support from friends, family and work colleagues. However, I didn't know anyone else living with HIV and needed someone to truly understand what I was going through. I had so many unanswered questions. What do you do with dating? What do you do with sex? How do you tell the people that you are scared of telling?

In 2014 my clinic signposted me to George House Trust where one of the advisors contacted me to discuss the support I needed. I was put on their peer mentoring programme which matched me with someone already living with HIV, to talk to, share experiences and to see someone living confidently with their diagnosis. This is what I needed; it was so comforting to be sitting opposite someone who was living with exactly what I was with living with.

The subsequent years have not always been easy, I faced stigma at what a HIV diagnosis means, and I faced rejection. I had friends at the time calling me dirty whilst dealing with my own worries at finding someone who would accept me for me. Then in 2015 the most amazing, caring and accepting person came into my life, didn't blink at me living with HIV and today we are married. His support and love carried me to another level and in 2018 I returned to George House Trust. I knew I wanted to pay back George House Trust’s help from all those years ago and felt if I could help just one person that would be amazing.

In the last three and half years I have become a peer mentor, supporting people who are living with HIV. This could be someone with a new diagnosis or people who years later are still coming to terms with their diagnosis. I support people this through shared, lived experiences but all the work is from the mentee. I am just there to facilitate their thoughts, questions and help them find the answers and hopefully increase confidence.

During the last three and half years, I’ve helped with three World AIDS Day Vigils, supported George House Trust with the Queens Volunteer Awards and so much more. George House Trust is amazing, and I have met so many inspirational people who have had an impact on my life today - I would not be where I am without them. Today in 2021, the medical advancements in HIV treatment means people can live heathy lives with daily medication - it is not the death sentence it once was.

If you are on effective medication and undetectable it is scientifically proven that you cannot pass the virus on during sex – Undetectable Equals Untransmissible (U=U). So, so powerful!

HIV is classed as a chronic condition like diabetes. However, the stigma, lack of education and awareness about how HIV has changed still exists and one of the many vital reasons conversations about this is still vitally needed.

So, here goes. I am writing to myself then when I had just been diagnosed. I am writing to myself to be the kind, compassionate voice I needed. I am writing to remind myself in the present the importance of speaking to myself in a kind and compassionate way.

Dear Karl,

This is like the 15th time I have attempted the opening of this letter to you. What do you write after living with HIV for the last 9 years with all you know now, all you have felt and how you now feel about your diagnosis and future 9 years on?

It may feel right now that you won’t get through this, but it changes everything…for the better.

You are going to experience acceptance, rejection, support, stigma, love, resilience, new people and viewpoints that are going to enrich your life.

It won’t always be easy, and you wont always feel like you do today, but it does get easier, and you will use your diagnosis to spread good in the world and to help others. You have to remember tht you are kind, warm and resilient! A bus has come steaming along and knocked you off your feet but let me tell you something, you do get back up and you will go on an incredible journey. There is a saying that will stay with you for the next 9 years: “it’s not about how hard you fall, it’s about the getting up that’s important”.

To be diagnosed as HIV positive when you know nothing about it, or anyone else living with the condition will be a very scary place to be in – that’s the fall. The next 9 years of living with HIV and truly accepting it yourself to becoming an activist to stamp out the stigma that still exists today – that’s the getting up.

Everything you needed to know 9 years ago, you find, and you realise that everything will be ok. I am not saying that everything is going to be great, and yet you will not want to change a thing and will be thankful for all the experiences, all the people and the person you turn out to be.

Now go out there, live your life and show others that they do not need to be ashamed of who they are either.

Love Karl xxx

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