When I first saw the now-famous Aids tombstone adverts in the 1980s, I thought they didn’t apply to me.
I was married with two children. I had been sold the lie that HIV was only something that men who have sex with men could get.
So when I was diagnosed at the age of 55 in April 2015, it came as a massive shock. I didn’t even realise that women could get HIV until it happened to me.
But it can happen to anyone – I cannot stress this enough. It can take just one time, unprotected.
I was single after my divorce, and after sleeping with one person, was sexually inactive for five years. I was still diagnosed with HIV.
It took until I was on the brink of death before anyone thought to test me – by that point, it was almost too late. I had been seriously unwell with different illnesses for about five years.
I thought I had swine flu in December 2010 – although I didn’t attend the GP, it is now apparent this was seroconversion that occurs when HIV has been in the system around four to eight weeks.
From there, I was in and out of the GP so regularly with a range of illnesses including oral thrush, gastro issues, hair loss, muscle weakness, skin rashes, depression, anxiety and finally breathing difficulties. I felt like a hypochondriac – but looking back, I realise this wasn’t the case.
The reality is that I was completely overlooked for so long because I was a middle-aged straight woman and not seen as at risk of HIV.
It’s utterly ridiculous that it took so long when HIV tests are so quick and easy. It got to the point I had to walk out of my job because I was so unwell and couldn’t cope anymore.
My health had deteriorated so much that my GP admitted me to hospital because I didn’t have an immune system.
A CD4 count gives an indication of how healthy your immune system is. A good CD4 count is considered to be anything over 500, and anyone with a count that’s lower than 200 is seen as at risk of developing serious illnesses – my CD4 count was just six, meaning I had Aids.
After having a CT scan, the doctors realised that I had PCP pneumonia, a fungal infection of the lungs that can be life-threatening. My daughter was told by my consultant to spend a lot of time with me because they didn’t think I was going to survive. It was an absolutely terrifying time.
Most people who get PCP have a medical condition that weakens their immune system, like HIV and Aids, so this was the catalyst for me finally being tested. When an HIV test was suggested, I agreed to it without hesitation. I was having various tests every day, so having one more wasn’t going to make a difference.
The incorrect belief that HIV is something that only affects a certain type of person is one of the reasons why an unacceptably high amount of people are diagnosed with HIV late.
In 2020, 42% of HIV diagnoses across the UK were late, this went up to 55% in straight men and 51% in straight women. At this point, the virus has already started to damage the immune system.
My late diagnosis means that I have long-term health problems – I still have memory loss and had reduced mobility for a long time – but I do still have a fulfilling life. I look after my grandchildren, go to my daughter’s house for dinner, and tend to my garden.
My health deteriorated to the point where I was on my deathbed, but thankfully recent developments in treatment meant that I was able to recover and keep the virus controlled.
People like me who are on effective HIV treatment also can’t pass on the virus to anyone else. Medication suppresses the virus to undetectable levels so it then becomes untransmittable. U = U – Undetectable equals Untransmittable!
The number of new HIV diagnoses among straight people is higher than in gay and bisexual men for the first time in a decade, the latest figures show. Prior to my diagnosis, I would have been really shocked at this.
I now know that HIV can and does affect people of any gender, sexuality, ethnicity, and age.
For the past few years, I’ve been passionate about getting the word out that everyone – including us women – need to get tested for HIV. From a young age, we’re taught about the risks of getting pregnant and other STIs, so why are we sheltered from HIV education?
People’s awareness of HIV continues to be outdated – my knowledge of the virus was absolute zilch until I got diagnosed, and it shouldn’t have to get to that point.
People continue to be shocked by the fact I have HIV – as a straight middle-aged woman from Birmingham, I’m the last person they expect to have HIV – and that is a problem in itself.
From an early age, people need to be educated on the reality of HIV today, and that people living with HIV don’t pose a risk to society, especially if we’re undetectable. It’s the people that have never been tested that are the risky ones.
I’m proud of how far I have come since my diagnosis. It was scary at first, but now I am committed to spreading the word about how important it is to have regular HIV tests.
It’s time for everyone to take control by knowing their status.
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