World Aids Day I’ve had enough of people judging me
Most of us have heard of HIV – which stands for human immunodeficiency virus – but not many know much about what it is like to live with it in 2020. Today is World Aids Day, and over the past week we have been sharing the stories of people in Bristol living with HIV. Here, Estel Farell-Roig speaks to Ashley, a 60-year-old from Staple Hill
IN 2015, Ashley Hawken went to hospital in agony with appendicitis, but what they didn’t realise is the blood tests done would pick up something else: they had HIV.
However, Ashley – who identifies as non-binary – wasn’t told straight away and, instead, was sent home and a few days later was asked to come back in to see the HIV team.
Ashley was 55 at the time and had a late diagnosis, having contracted the virus five years earlier.
“I kept getting sicker and sicker and the doctor did tests but they couldn’t find anything,” Ashley continued. “I was in shock at first [when finding out about being HIV positive] but then it was a relief because I knew then what was wrong with me and I knew I could get better.
“I was seriously ill – I weighed 10 stone at the time and had skin problems.
“I was in a bad way and I was tired all the time.
“My life was just going to work, having something to eat and going to bed as I had no energy for anything else.”
Ashley said the late diagnosis meant their immune system had been severely damaged by the HIV virus, being close to developing AIDS.
HIV (human immunodeficiency virus) is a virus that damages the cells in the immune system and weakens the body’s ability to fight everyday infections and disease, explains the NHS, while Aids (acquired immune deficiency syndrome) is the name used to describe a number of potentially life-threatening infections and illnesses that happen when the immune system has been severely damaged by the HIV virus.
“I was put on antibiotics straight away and they were very good with the way they put it [in the hospital],” Ashley added. “I didn’t realise how seriously ill I was – it was a worrying time.
“I went on treatment straight away and got the viral load down quickly.”
The 60-year-old said it took 18 months for the amount of HIV in their blood to become undetectable thanks to treatment, while for most people Ashley knows it took about about six months to do so.
“I was such a late diagnosis the virus had time to take hold of my immune system - I had a hard time fighting it,” Ashley continued. “The first couple of years after the diagnosis were hard.
“It is annoying that it took so long to be diagnosed.”
Ashley said, after contracting HIV at the age of 50, they experi
I was such a late diagnosis the virus had time to take hold of my immune system - I had a hard time fighting it. The first couple of years after the diagnosis were hard Ashley Hawken
enced bad flu symptoms for about two and a half months and was in and out of the doctor’s surgery, but they were just told it was a virus and to eat.
A year after contracting HIV, Ashley started to experience tiredness and skin problems, including shingles on their face that would not clear up.
The appendix also started to cause them problems but Ashley ignored it.
Having contracted HIV through unprotected sex, Ashley said: “Having sex is part of human nature and I want to raise awareness of the consequences of having sex without protection.
“HIV isn’t normally associated with older people.
“I don’t regret having HIV, the best thing I can do is to accept it.”
Ashley, a retired coach builder who has lived in Bristol all their life, said they were feeling a lot better now and, having retired and feeling healthier, they cycle a lot.
They added the diagnosis had made them appreciate life more.
Ashley, who takes one tablet a day, said they thought younger people were probably more aware of the importance of getting tested, adding they tend to be better at fighting the virus off.
The Staple Hill resident said there are several misconceptions around HIV, such as people not knowing the difference between HIV and Aids.
“We are probably the safest people to have sex with as we know what we have got,” Ashley continued. “I think what has happened since the 1990s is that it has become too embarrassing to talk about sex and HIV.
“Everyone seems to think that it
Having sex is part of human nature and I want to raise awareness of the consequences of having sex without protection
Ashley Hawken
has gone away but it hasn’t and, in fact, Bristol is a high-prevalence area.”
Ashley said one of the dangers among older people is that, not worried about getting pregnant anymore, they may have sex without protection.
“It all comes back to this misconception that older people do not have sex or have fun,” Ashley said. “Older people have got a life and we do things.
“I have had enough of people judging me, which is why I am really open about my status.
“I don’t really care people about what people think, we are all human beings and there are worst things to have than HIV.
“There is still a stigma around HIV and I think it is important to break the myths around it.
“We have the same life expectancy, for example.”
Ashley, who is single at the moment, said the hardest thing about HIV was telling a potential partner because of the fear of being rejected.
They said it was necessary to increase people’s knowledge about HIV, adding most people’s understanding is outdated.
In a statement, Brigstowe, a Bristol charity supporting people with HIV, said from the latest data, they know that one of the groups with the highest rate of increase in HIV diagnoses is heterosexuals over 50 years old.
It added: “In addition, this group are often diagnosed late which can have a negative impact on their long-term health. It is more important than ever for over 50s having condomless sex to test for HIV and other STIs regularly.
“For many reasons we don’t think about older people having sex. Even doctors can avoid discussing this with their older patients. It can feel awkward and because of this we don’t talk about it.”
The statement said there were many possible reasons this increase is happening, such as older people may be having more sex than they did previously.
It continued: “They have the same access to all of the dating sites and apps that younger people do. It is a lot easier to date in 2020.
“This is also a demographic where sexual health education in their younger years was not as robust as it is today. They may mistakenly think that because they do not define as gay then HIV is not applicable to them.
“Women in this age group are usually post-menopausal so due to no risk of pregnancy they may not feel the need to use condoms.
“Levels of divorce have increased with people leaving unhappy relationships and meeting new partners.”
Ashley is now a mentor with Brigstowe, as well as being part of their campaign group.
Getting involved with the charity in 2017, Ashley added: “Brigstowe has allowed me to connect with other people and I have made friends with all sorts of people who are living with HIV.
“It has done me the world of good and I am much more confident now.”
World Aids Day has been marked internationally on December 1 every year since 1988. Brigstowe said it aims to remind everyone that HIV has not gone away and there is a vital need to increase awareness, reduce stigma and raise vital funds.
“Watch out for some Bristol landmarks turning red on today #TurnBristolRed,” it said. “Brigstowe has planned a weeks’ worth of free virtual events to mark World Aids Day open to anyone.
“To find out more information on these events and how you can support someone living with HIV this World Aids Day visit our website www.brigstowe.org or text BRIGWAD 5 or BRIGWAD 10 to 70085 to donate £5 or £10.”