Time to read
My name’s Becky, I’m 50 years old, and I work full time as an executive assistant – but I’m also a personal trainer and running coach. I have had good health all my life. So I’m very in tune with how I feel.
In 2012, I was in a good place both physically and mentally. A few years before this I had got heavily into cycling, progressing from indoor classes to road cycling then gradually cycling longer distances. I did the Bristol to London bike ride in 2009, and then did 100 mile rides through the Brecon Beacons, and through Scotland. Coming out of a long-term relationship, the fitness stuff helped me channel what I was feeling into a more positive way, rather than slipping into habits like drinking too much. It was a great mental focus for me.
Then, that July, I felt unwell for a few weeks.
I was a bit concerned that it was something more serious than the touch of the flu because of some of the other symptoms I was having. I came up with a rash on my chest, and I thought – this is odd. But then I started to feel better.
Then next month I got a message that let me know that I might have been at risk of transmission in my relationship. If I hadn’t got that message, I wouldn’t have gone to take a test because I was feeling OK again by then.
But I went to get tested, and on 17 August of that year the GP who has been my doctor since I was about 8 years old gave me the HIV diagnosis. He was really supportive, and held my hands as he gave me the news.
I had all these running and cycling events coming up, so my first reaction was to say that I didn’t have time to be unwell! The doctor laughed and then said: You know, you will be fine. It will be a difficult road at times, and uncertain, but modern medications work really well. He phoned me a few days later just to say he’d been thinking about me, and wanted to check in and make sure that I was OK.
He had also told me that it was lucky I found out early on. At my first hospital appointment, they told me that my CD4 count was high and my viral load was really low, which was a relief.
But despite this, there were of course some dark days – days when I felt angry, upset and scared. I knew that there was no cure.
But I also knew that I was not going to be someone that just shut myself away. So I had to find a way to come to terms with the diagnosis. It was helpful that my mentality from fitness was one of being disciplined and focused. And it also helped that I was surrounded by some really strong and resilient people. I’m really grateful for that.
My hospital in Bristol put me in touch with a local group for women living with HIV. After an initial chat with the organiser, I went along to those meeting regularly. It was just nice to be among people who understood where I was coming from, to hear their stories and to answer any questions that I had, in those early days for me.
It was a safe space to share stories with each other, when quite a lot of the women hadn’t every talked publicly about their diagnosis – some of their families didn’t even know they were living with HIV. So it was a privilege to be there and be a part of it. And some of these women were amazing – really strong.
For myself, I spoke to a couple of close friends first – and they were really lovely, and kind. And then I told my family. They were upset, but supportive. Nobody shunned me. In the first year I kept it limited to family, close friends and also my boss at the time who was also really supportive. I was working at an organisation whose chairman was also living with HIV, so I was able to have a chat with him about it. I remember him telling me: You just need to get used to a life of uncertainty.
Quite a lot of my friends were really surprised that it had happened to me. Because people like me – women – are still really underrepresented when people talk about living with HIV. So I wanted to change that.
I’ve never felt embarrassed or ashamed about my diagnosis, and want to take any opportunity that I can to educate people. So if anyone’s got any questions, I’m always willing to answer – if I can teach them something, then that’s even better. And my colleagues really helped with this, they really wanted to champion what I was trying to do.
A year later, I was offered the opportunity to begin treatment as part of the START study, which was set up to determine if it would be better to get people started on treatment earlier. Back then they didn’t generally start you on treatment straight away, so I liked the idea of exploring this.
Within two weeks my viral load was undetectable. They had to call me in to retest it, actually, because no one had responded that quickly before. So that made me feel a bit superhuman! I thought: Right, this is where I can start to fight back.
I know that I can only speak for my own experience, and it’s not lost on me how fortunate I have been. I know that that’s not the case for everyone. I’m very mindful of that. I don’t ever want it to sound like I’m blasé or as if it has all been easy because it hasn’t.
I have occasionally experienced negativity – like after I have done media appearances, talking publicly about living with HIV. I’ve sometimes got unkind comments. But I just think: These people don’t know me. I still choose to just see this as an opportunity to educate people.
More concerning incidences of stigma are those that have come from people in healthcare. In 2014 I had quite a serious cycling accident, which had damaged my leg, so I had to go to hospital and get some stitches in my ankle.
I let them know about my status, because HIV medications sometimes interfere with antibiotics, and I didn’t want to compromise my treatment. And I let them know about my CD4 count and viral load, in case they needed to do a skin graft or any other surgical procedure. That was all fine.
But after I was discharged from hospital I had a follow-up appointment with a young doctor. My mum was there too because she’d driven me there. The doctor looked at me and Mum, and then asked me if I was an intravenous drug user. I said no, and then he asked: well, how did you contract it? I was so taken aback that I started to explain, but then I thought: hang on a minute, this is totally irrelevant to what I’m here for. What’s that got to do with anything?
And he also told the nurse who was looking after me to make sure she took extra precautions. This nurse had worked on a ward that had looked after HIV patients, in the late 80s and early 90s, so she knew that this was not appropriate. She encouraged me to write in and complain, which I did – and got an apology from the doctor.
Another time, one nurse told another that she had to put gloves on before giving me the flu jab because “she’s HIV”; and once my dentist told his nurse that she had to wash hands after treating me, even though she had gloves on.
I think healthcare professionals should know better – particularly the younger ones!
I saw something about National AIDS Trust’s Community Advisory Group a couple of years ago. I got in contact with the person who was organising it, and we have a lovely chat on the phone, and then I joined the group.
I felt it was important for two reasons – firstly because I wanted to represent women living with HIV, and secondly because it was good to be amongst the community of people living with HIV, and hear their stories.
People who are long term survivors as well as people newly diagnosed. It was really tough in those early days, and I think it’s important to acknowledge, respect and learn more about those stories.
If I could advise someone today who has just received an HIV diagnosis, I would tell them to be kind to themselves, and to educate themselves as much as they can. Community support is key. Find organisations that can support you, and reach out to them.
Be proactive with your health, look after yourself and make sure you don’t miss any hospital appointments, but also be proactive with the support that you need. And there is a lot of support out there.
Less invasive treatments are being developed. There are different options available, or becoming available, beyond the daily pill that I now take.
I think if you are living with HIV, you need to be proactive about your own health, and if you are in treatment that means that you are protecting other people, as well as looking after yourself. It’s not just about you.
In late 2019 I was nominated by colleagues for an MBE, for my services to HIV awareness. It came as a complete surprise! I remember getting home and seeing this white envelope marked “important”. My first thought was: Oh no, I’m in trouble! But then I thought that generally if you’re in trouble, it’s a brown envelope, isn’t it?
So I opened it, and it was from the Palace, telling me that I’d been nominated. I was very taken aback and thought it was a hoax. After filling in a form, then speaking with their Press Office, I received confirmation just before Christmas. Until I saw my name on the official website, I didn’t quite believe it was real.
Once it sank in, it was very humbling and I felt very privileged and proud. My investiture was in March 2020, just three weeks before the first national lockdown. It was the first one that the Queen had ever done wearing gloves, and there was hand sanitiser provided! My mum had always worried that people would be unkind about my HIV, and I was sad that she wasn’t around to see me getting this recognition. It felt like a bit of a “two fingers” to people that had ever been judgemental about me in the past.
I was very fit and active prior to my diagnosis, and this has remained a constant. I’ve gone on to do things I never thought I could or would do, like qualifying as a personal trainer and running coach. I lead running groups and run kettlebell classes, and I really love it.
I ride the highs, try to survive the lows and keep my sense of humour through it all. HIV has changed my life but has not limited me; and while it has been quite the rollercoaster ride, I have fought back hard. I’m still the same woman I was before, just older, stronger and hopefully a bit wiser.