Dan Carter chats to Lewis Wilkinson about his HIV diagnosis

When were you first diagnosed? 

The 4th September last year,

What prompted you to go for a test? Did you have symptoms or was it just a routine test? 

First of all there was a full body rash which was on my face quite badly and I'm quite a red faced person anyway so it was noticeable. I went to a doctors at first and they gave me a load of creams to treat a rash, they obviously didn't work and then my glands swelled on the side of my neck to a noticeable proportion and then I was ill for a good week and a half, I couldn't get out of bed, At that point I'd already tried to get a test, it was one of those where you have to get there super early and I just couldn't, so eventually when I did get tested I sort of began to suspect it could be something worse. 

When you got that diagnosis how did they tell you? 

It's my own stupid fault, I wish I hadn't done it now, I go to Urmston clinic in South Manchester and to get my results I would have needed to go to Urmston and I was all the way in North Manchester at the time and I knew for a fact that if they were calling me then there was something wrong so I said, 'can you tell me over the phone please?' Because if it is HIV you don't treat that at Urmston anyway you have to go to the Hathersage so I made them tell me over the phone and sure enough it was HIV.

I suppose over the phone it's difficult because you've not really got that person to give you support face to face?  

My partner was asleep in the room next door so my first initial reaction was to go quiet and have a cigarette and I went and told him. 

In terms of medical support and counselling support what was that like initially? 

The Hathersage were fantastic, I'd personally say one of the best services in the UK for medical support, for keeping you updated on absolutely everything that you need to do and everything they're doing. They make you feel like, even though you're not the only person in the world who has come through the door with that issue they make you feel like you're the most important person at that time. Counselling support is offered by them through the George House Trust which is an amazing organisation.  

When I think about my GP and getting test at the Hathersage I find a huge disparity because my GP is saying I'm getting tested too often, what's your thoughts on that? 

I think getting tested should be something that is personal to the individual, if someone wants to get tested every 3 months, get tested every 3 months, if someone wants to get tested every 6 months get tested every 6 months just as long as you know you're taking the right precautions in that space of time. 

You recently revealed that you've become undetectable, what does that mean?

So undetectable is when the level of virus in your body drops below a certain level and there is no possible way whatsoever that you can pass on the disease so I started off with a viral load of over 700,000, when it fell to below 50 within 6 months I could say I was happily undetectable and there was not a single chance as its been proven now to pass on HIV. 

How does someone who is HIV positive become undetectable? 

Through your ARVs, your antiretroviral medications, you do a course of them, I started off on 3 pills once a day, fits into my routine like I brush my teeth. It took a little while longer for me just because at the time I was being a bit lazy with it , maybe a little bit in denial, I was forgetting and I was very forgetful with it at first but eventually I got there. 

Did that diagnosis have an impact on your mental health?

Oh yeah. I spent a lot of time off work, a lot of time just not getting up in the day, my sleeping pattern was pretty much night time up, listen to music, play the X-box just to ignore the problem. I drank a lot before I told anyone what was up and I would lash out at people without any explanation so it was effecting everybody around me. People were getting alienated so when I decided to be open I knew I had to calm down and get my other emotions in check as well. 

You've become quite the advocate for people living with HIV. What prompted you to be so open? 

I think after all the initial confusion and self shame and self stigma, at the end of it all I thought about the time that I live in and the city and the services available to me and I just felt lucky. When you go onto think about people in impoverished areas who don't have the acceptance of a place like Manchester or the support of friends who may have gone through the same experience. 

Have you experienced any stigma related to the condition?

Only once. It was an anonymous message in my inbox on Facebook in the message requests and it went along the lines of 'die you riddled cunt', I was on holiday at the time and it was the first time someone had ever upfront said 'riddled' or some sort of offensive slur about it at me but to be honest, other than that everyone has been very supportive and nobody has ever not been interested in the work that I do. 

If we talk about your involvement with Youth Stop Aids, how did you get involved?  

So I was always looking for a group that was interested in the global issue as opposed to the issue just in Manchester so when it came to searching I came across their website and it had sections for get involved now and what to do and the coordinator gave me a call asking me to come to Leeds where all the groups from around the country would meet up and promote the organisation within our own cities, from there I was asked to set up the Manchester branch which had been dormant for a couple of years. We did a load of workshops, went through a load of different ideas about how you could promote the charity in Manchester, at the time I was in two minds about whether I wanted a project this large to take on but I'm glad that I did. 

What are the overall goals of the organisation? 

So the overall goals are to one, promote the global fund and pressure politicians to seeing the good side of the global fund and pump more money into the global fund. In October this year it will be decided how much will be allocated to Global Aid this year and a lot of that has influence over what we do. It's also to educate younger people to stop stigma and to become HIV and AIDS campaigners themselves. With HIV not being a death sentence anymore I think a lot of the advocacy has stopped from the younger generations and that's another reason why we do what we do. 

The UK hit its 90-90-90 target (90% of people tested, 90% on ARVs and 90% of people suppressing the virus) ahead of schedule but what is the impact of cuts to HIV funding and support from the Government? 

That has had impact on younger people and younger people directly. We are the only demographic where transmissions are still going up and that's in the UK as well. A good example of funding cuts is what I mentioned before, Urmston clinic no longer do HIV care so if you're living on the far south side of Manchester your nearest clinic is the still the Hathersage. It effected myself directly and it would impact anyone else living in that area. 

In terms of PREP it has been great at reducing transmissions so far but do you think that PREP has made people complacent to other STIs? 

I think you have to balance the risk and the safety precaution against each other. I think PREP is a wonderful drug for stopping exactly what I'm trying to stop which is the transmission of HIV. Other STIs, your gonorrhea, your chlamydia, your syphilis are still awful things to happen to a person and awful things to feel but are very treatable so I think having that barrier safety from PREP means that 90% of the time its better if that's the right word to contract one of those as opposed to HIV. 

The UN have set a target of 2030 to put a halt on the epidemic, do you think they're going to reach that target? 

No, at the current state I'd say no. It's fantastic that it is now in the news that there is 0% chance of those on medications being able to spread the virus you'd have to regulate everybody to make sure that they're not sleeping with someone who isn't undetectable which is never going to happen. I think there's not enough funding being put into the poorer areas in the world and even if you look at the southern states in America they only have a suppression rate of 40% whereas it is 97% in the UK so there's not enough being done even in the countries with the most money. 

What support does Youth Stop Aids need? 

There is a part on the website where people can write to their local MP, there's a template and it will tell you everything you need to say and I'd like people to go out and lobby more, especially if you're a young person, if you feel that it is taking you so long to get tested you need to not just be saying I'll come back tomorrow you need to be asking why is it taking so long to get tested and why am I not more outraged about this which is exactly what prompted me to join Youth Stop Aids. 

Do you have any closing remarks that you'd like to end with? 

Youth Stop Aids meet 2pm every Saturday at the Library in the race relations room, if you're a young person living in Manchester you don't have to be living with HIV, most of our members don't, if you're interested in social affairs, medicine, copyright law or anything just come along, we would love to have you there. 

Published: 30-May-2019: (5415)