Breaking Down the Stigma: The Story of a HIV Positive Woman
Cindy* was diagnosed with HIV when she was only two. When she was told about her condition at the age of 12, her world fell apart.
Terrified that her friends would find out, she began to go off the rails. She turned to alcohol and stopped taking her medication, which jeopardised her body and immune system.
“I just didn’t care if I lived or not, I saw no point to anything,” she says. “I became very ill.”
Later that year she was admitted to Mildmay, the charitable HIV hospital located in the heart of East London that celebrated its 150th anniversary last month.
“Mildmay is a rehabilitation hospital for people who have been affected by HIV associated neurocognitive impairments,” explains Rebecca Nikurawo, the nursing director at Mildmay.
The condition causes symptoms very similar to those of severe dementia, including memory loss, confusion, difficulty in walking and speaking.
When patients are admitted they are assessed by therapists, given appropriate rehabilitation programmes and goal setting activities.
“Patients will then start being retrained and hopefully rehabilitated enough to go home and live independently,” says Rebecca.
“Mildmay made such a difference to my life,” says Cindy. “They helped me see beyond my HIV, that it does not define who I am. Mildmay gave me back my joy, they helped me find ‘me’ again.”
The hospital has been at the forefront of HIV care since 1988, when the stigma surrounding HIV was at its height, explains Juley Ayres, Mildmay’s communications manager.
“In the early days when Mildmay first became a HIV hospice, we were getting bricks thrown through the windows, the local barbers didn’t want to cut people’s hair, the banks didn’t want to take our money.”
Juley adds; “That’s why when somebody like Diana, Princess of Wales, came here – and she came on many occasions – she made such a difference.”
Princess Diana was a pioneer in breaking down the stigma surrounding HIV. She changed people’s perception of the condition overnight when she paid a visit to the hospital and was famously photographed shaking hands and kissing a terminally ill patient.
In December 2015, Prince Harry continued that legacy, visiting Mildmay and showing empathy to the patients.
However, despite the increased awareness of HIV in the last decade, stigma still plays a crucial role in Cindy’s life and many others like her.
“Stigma divides my life into public and private,” says Cindy. She explains how the stigma attached to HIV makes her paranoid and secretive.
“I am careful to hide any letters from the hospital in case anyone coming around sees them. I shred all the boxes that hold my medication, it can be pretty exhausting at times!”
“Stigma divides my life into public and private”
In the UK an estimated 103,700 people are living with HIV, with around 7,000 people newly diagnosed every year.
More importantly, 17 per cent of people with HIV in the UK are undiagnosed and 2 adults in 5 are diagnosed late.
“At Mildmay we see the direct results of people that come in with a late diagnosis and often the result of that is HIV associated brain impairment,” says Juley.
She explains that the level of stigma and the misunderstanding of HIV often proves itself decisive in the timing of the diagnosis and, hence, in the outcome of the treatments.
“I think it’s really important that we have dialogues and talk about it, because that’s the only way people start to understand a little bit more about it. It breaks down fear, and, also it means that hopefully people are much more likely to get themselves tested.”
Nowadays, HIV is no longer a death sentence. When diagnosed on time, people can start their cycles of antiviral from an early stage and thus become undetectable.
“I think it’s really important that we have dialogues and talk about it”
Many people, however, struggle with the connotation that a HIV positive diagnosis assumes in our society and therefore avoid getting tested or stop taking medication.
“When I hear people say cruel things it makes me go cold, and I am glad they don’t know that I am living with HIV,” says Cindy.
“I think the negative words people and the media use don’t help. There are often stories in the news that seem to be full of blame and moral judgment and that affects the way people think.”
There tends to be, in fact, a moral judgment when it comes to HIV. Since it is associated with sex, homosexuality and needles – unlike with other conditions – with HIV there is an assumption that who acquires it has, somehow, ‘had it coming’.
“If there is one thing I have learnt it is not to judge and to be more understanding. I know through my own experience that people often react out of pain and there is always the bigger picture,” says Cindy.
“There are often stories in the news that seem to be full of blame and moral judgment and that affects the way people think”
In spite of the difficulties Cindy has to face daily, she maintains a positive attitude towards the future and treasures what she has learnt from her experience.
“It’s important to see beyond the person and understand what they may be going through,” she says. “Hope is very powerful and I can give that to people”.
*Cindy is not her real name.