Tom Hayes @PositiveLad, the writer behind the beyondpositive blog, tells us about his HIV journey, why testing is so important and why he thinks there is no such thing as a bad HIV test result.
How did you find out you were HIV-positive?
After coming out of a long-term relationship in my mid-20s, I spent a year on my own in London and, as it turns out, without really knowing how to look after myself. When I moved back to Birmingham in the summer of 2011, I took a routine STI test.
I was actually on holiday when I got the call. When I explained I couldn’t come straight into the clinic, the panicked nurse said ‘sh*t, don’t have sex with anyone’ and hung up. She couldn’t give me my results over the phone, but I knew from her reaction that I must have tested positive for HIV.
What has been your journey since?
It was an emotional rollercoaster at first, and in my opinion, badly handled by the clinic. In getting my test results, I was in and out in less than five minutes – simply given a giant paper bag full of leaflets.
It was a difficult time and so I didn’t engage in HIV care for three months. That all changed when I spoke to a positive friend who threw a verbal bucket of water over my head and convinced me to take action. Once involved with the HIV team, I saw a completely different side of things – their approach was personal, relaxed and supportive and the result was that I was undetectable by Christmas and have been ever since.
Can you tell us about what led you to start your beyondpositive Blog and PositiveLad Twitter account?
It was that giant paper bag of leaflets. It could have been for anyone and had been really dumbed down. I therefore started blogging, writing in plain English what I felt was relevant and relatable.
How do we encourage people to get tested?
It is currently estimated that approximately 6,000 people in the UK don’t know they are living with HIV, and so also don’t know that they can pass it on to their partners and children. No one wants that on their conscience and getting tested means you’re in control of it.
Testing has also come a long way in the last few years. It no longer means waiting for weeks for a test result. Now there are self-HIV tests, for example SimplitudeByMe, that provide you with results in just 15 minutes – in the comfort of your own home. Instead of vials of blood, a simple finger prick is now all you need.
My experience has taught me that all HIV results are good. Aside from a means to get treatment, it is often a turning point in a person’s life, forcing you to think about your lifestyle, and not just diet, alcohol and smoking, but also other areas of stress, fulfilment and what we give back to society.
New PHE figures report that late diagnoses are still worryingly high (42%). If home testing is one of the ways we can support people in getting tested early, do you think options are well enough known?
We need to do more to proactively reach more people, particularly people in high-risk groups, such as trans, Afro-Caribbean or South Asian communities. The success of reaching these communities is as much about putting ourselves outside of our comfort zones as it is understanding where a sensitive approach is required.
UK HIV Testing Week is upon us. What do you think about this initiative?
It’s a wonderful opportunity to get people tested in big numbers, and we set a new record every year – thanks to the work of volunteers. It’s a week where HIV is the headline story and an opportunity to make HIV testing visible outside of sexual health clinics or hospitals. As a country we have excelled in our UNAIDS targets to eliminate the virus – but last year was difficult with many clinics not being open, so this year is more important than most.
You’ve tried the SimplitudeByMe home testing kit. What did you think?
It is easily the simplest test I’ve tried – hence the name I assume! As a third-generation product, you get the feeling that it has been designed with the user in mind. All built into one device, rather than there being a separate tube and lancet, the blood is taken quickly, easily and cleanly and you can do it anywhere that is convenient and appropriate for you – in just 15 minutes you can take control of your life.
2020 was a year where we have had very little control of our lives because of one virus – this testing kit is a useful tool in checking that another virus isn’t able to take control of our bodies.