Stigma

Words by Anoju Devi - Photography by Roo Lewis

This is a snippet of an article written for the Fourth Issue of The Quarterly. In support of World Aids day 2014 with the help of NAT.

HIV isn’t a condition that is found in specific groups such as homosexuals, black Africans or drug abusers, it’s a human condition, one that affects 107,800 people living in the UK (Public Health England, HIV in the United Kingdom: 2014 Report.)

Yet despite that, HIV is probably one of the most misunderstood, stigma filled and myth led conditions today. We all have an idea of what it is, most of which is inaccurate and perpetuated by negative stereotypes thrown out by the media, family, friends and peers alike.

Our views of the HIV virus are coloured in a negative way and borne from an uneducated mindset. The forming of opinions and thoughts and spreading them without understanding what it is that we’re afraid of, nor the damage it can do.

More often than not it stems from fear with a focus on stats and figures rather than understanding and showing compassion for people with the condition. Looking at HIV in that way means the human touch is lost, it becomes a faceless condition. This is perhaps one of the reasons why it’s still seen in an incredibly negative light. We fail to appreciate that these are people, with lives, who go through the same problems you and I face on a daily basis.

To raise awareness of HIV, and to mark World Aids day, we’ve spoken to a group of individuals asking them to share their own personal journeys with HIV and the challenges and stigma they have experienced and encountered throughout their lives.

It is a big multi layered topic to consider and one we’re not in a way able to explore fully, but felt it was important to share the faces and trials and tribulations faced by people. Hopefully this will encourage people to be more considerate when they meet someone with HIV and realize that they’re people too and that there is nothing to be fearful of.

Jo Josh is a journalist, who’s become an avid campaigner and works incredibly actively in the community to raise awareness of HIV and dispel the myths people have about the virus. In her own words, she is a white female, middle aged, middle class, heterosexual- not fitting the usual HIV stereotypes at all, of gay men or black Africans.

Jo Josh

Diagnosed with HIV in 2008, nobody apart from her boyfriend, 24 year old daughter and a few close friends and family knew Jo was HIV positive, until she revealed it in a television interview. She was admitted to hospital after suffering what she then thought was severe flu. She was tested for HIV although the test proved negative as the virus is undetectable if it is in your body for less than 72 hours. A second test after those initial 72 hours came back positive.

She says it came as a “total shock” and she didn’t know much about it.

“I only remember saying, ‘I can’t die, my daughter needs me’,” she says. The idea that having HIV meant a death sentence came to the forefront and compounded that fear.

“And then a male nurse telling me, ‘You could live to be 100′.” This is remarkable in itself and is reflective of advances in detection and treatment. Years ago it was pretty much a fact that you would die if you had HIV and this is where some of these negative viewpoints would have stemmed from. It was a death sentence. But the years of medical research that has been done since it was first discovered has meant that people are living almost normal lives.

Jo herself had no idea how much treatment had developed before it became part of her life. Where once you would have to take up to 30 tablets a day in the 80’s, now due to the development of antiretroviral drugs,  you need only take one tablet It’s not a magic bullet mind you,  and there are side effects to the drugs that are taken that can still affect day to day activities.

“I have a vision that everybody with HIV will be able to stand up and say it,”

Jo is involved with a number of voluntary organisations, particularly in the mental health and HIV sectors. These include Body & Soul, a UK charity for children, teenagers and families affected by HIV, and UK-CAB, a network for community HIV treatment advocates across the UK. All this keeps her busy and is fuelled by her desire to support people living with HIV and to educate the masses.

She’s keen to highlight that the ‘It’s your fault’ attitude prevalent in society and even the medical profession needs to change. The general perception is that those with HIV lead promiscuous and irresponsible lifestyles. The reality is that HIV can affect anyone. It’s more commonly sexually transmitted or through the use of infected syringes. HIV is not passed on through spitting, biting or sharing utensils.

The focus should be on eradicating the stigma and isolation for anyone living with HIV. As well as the emotional impact, this extends to the social impact such as benefits and employment support, which is an ongoing hot topic of political debate.

“I have a vision that everybody with HIV will be able to stand up and say it,” says Jo, ”And not have to be as terrified as I was when I was first diagnosed.”

On the whole, the response was very supportive, although Jo had a job convincing people she “was actually fine”.

“People would say, ‘Oh God, I’m so sorry, Jo’, in what I started to call ‘the death voice’,” Jo says.

“I’d say, ‘Well, actually, I’m fine,’ and then they’d say, ‘Oh you’re so brave!’”

Jo’s initial reluctance not to tell her daughter straight away was replaced and she worked with her to prepare and deliver a presentation on HIV at her daughters 6th form college, highlighting the realities of the virus to the next generation.

The social impact of the condition forms the focus after a diagnosis, often far more than the physical aspects. The fear of being ostracised, that’s the biggest problem for newly diagnosed, not the virus itself. If HIV still has status as a scary disease, that’s down to society’s attitude, rather than the virus itself.

Only with people like Jo, committed to raising awareness of the facts and galvanising change in attitudes will stigmas be eradicated and people living with HIV have a better quality of life.

The general perception is that those with HIV lead promiscuous and irresponsible lifestyles. The reality is that HIV can affect anyone.

Dr Olwen Williams

To understand the progression in HIV awareness and treatment in the medical field in the last 30 years we tracked down Dr Olwen Williams, a Consultant in Genitourinary medicine and Director of Sexual Health Services in North Wales.

Dr Williams was in her last year of med school when she first became aware of HIV. At the forefront of this was the Horizons programme which looked at what was known about HIV stigma and ways to reduce it. The problem Dr Williams explained was that it actually labeled people with HIV as victims and was sensationalist in its approach. There were no women identified and as a third of those living with the virus today are female, it was not representative at all. This sensationalism still exists today in the media as people are more concerned with how it has been contracted, rather than the story of the individual and what it actually means to live with HIV.

From a personal perspective, Dr Williams was dissuaded in pursuing a career in HIV management in the 1980’s as her colleagues felt it was a dead end job. Had she not been slightly rebellious and relished the opportunity to influence change and work with minorities, the impact she has had in improving the quality of life for so many people with HIV would not have happened.

In the 80’s, there was no information about HIV out there. All that was known was there was a new disease out there that was killing rapidly. For someone newly diagnosed with the condition, and for medical professionals alike, this was a huge challenge. Intervention could not be planned and doctors were not able to advise and support patients. The advice from doctors in the 80’s for patients with HIV was to prepare for death, enjoy the remainder of your time, go on holiday.  Discrimination was rife and gay people were ostracized. Deaths from suicide were all too common. There were no monitoring tools for clinicians. Hospices sprouted up everywhere for patients to spend their last days. Thankfully, these are no longer in existence because of the revolution in disease management in the last 30 years.

Aids related complex was a term used in the early years of the AIDS epidemic to describe people with HIV infection who had only mild symptoms of illness. There was a palpable fear and people preferred not to know.

The reality now is of course very different. Interestingly, one of Dr Williams first patients diagnosed with HIV is alive and well to this day. The initial shock and emotional journey he experienced has changed and now resonates as a feeling of hope.  Dr Williams has been on her own personal journey with her patients, advising and influencing them in an incredibly positive way.

The problem Dr Williams explained was that it actually labeled people with HIV as victims and was sensationalist in its approach.

A huge movement around testing began. Not only can you now be tested for HIV in 15-20 minutes, the accessibility has increased meaning that early detection no longer means a death sentence. Routine testing will go a long way to de-stigmatise HIV as people will become more aware of and receptive to the facts and know that you can lead a normal life. We are all complicit in the perceptions we hold and share about HIV but more still needs to be done.

Encouragingly, people are more positive and demanding the tests.  They are more aware of the medical breakthroughs in drugs in the last 30 years. Remember, anyone can contract HIV. Through effective testing and a responsible attitude, devoid of societal prejudice, we can work towards early detection and a better quality of life for anyone living with HIV.

The National Aids Trust has been instrumental in developing policy, raising awareness and supporting individuals with HIV and their families.

The overriding emotion and impact we want to translate is one of hope. Hope that attitudes continue to change. Hope that we can all live together in an educated world without prejudice and compassion for our fellow man. Hope that one day a cure for HIV will be found. With the dedicated team of medical professionals of this generation and next, we can make this happen.

James Hanson-McCormick

‘Education needs to change’ and people need to be more aware. Gay people do not talk about HIV as they fear the stigma.. It is still considered negatively and attitudes have not improved’

James Hanson-McCormick, a young 25 year old was diagnosed with HIV at the age of 18. He had heard the term HIV but as education on the subject was non existent at school, his immediate perception was that it was a death sentence.

He was giving blood routinely when he received a call asking him come into the surgery. He was with a friend who he was taking out for the day so she joined him. When he was given the news that he was HIV positive, he struggled to absorb the information. He was not provided with any support from the doctor and was advised against making any rash decisions when he said he needed to confide in his friend.

James was clear that is was his choice to tell his friend and his decision alone.

Before he was diagnosed, he was working in a church and trying to come to terms with his sexuality. ‘People didn’t accept me for being gay.. it shattered my world.’ He refused to put a mask on everyday and live a lie and courageously made the decision to come out. He moved to Cornwall following his diagnosis after losing the support of all of his friends, none of whom were gay, he suffered from depression and was institutionalised for three months suffering from depression and committing self harm. However, he found the HIV services and the support they provided in Cornwall was great. The access to HIV services in other parts of the country have not been so positive and he feels that with more funding, this could change. He’s built a strong relationship with his nurse and is able to call her whenever he needs to.

James is passionate about pushing change and making change happen. Even through something as simple as wearing a red ribbon or donating money to fund research, it goes a long way to influence attitudes.

‘Education needs to change’ and people need to be more aware. Gay people do not talk about HIV as they fear the stigma.. It is still considered negatively and attitudes have not improved’

He went onto say that HIV affects everyday people, who wouldn’t know they had it. ‘The only way attitudes will change is if there is more openness and people standing up for it.’ He’s openly faced stigma in relationships when he’s disclosed his status. He is now married and his husband encourages him to write and do interviews to promote awareness of HIV and stigma, something he admits he would never have thought he would be doing if someone told him that 6 years ago. He still suffers from severe depression and the medication keeps him going. In spite of this, he lives in hope as he knows the medical professionals know what they are doing and he is also in a position where he can help others through his writing and openness to talk about HIV without fear.

He believes that change has taken too long, even with something as basic as same sex marriages. A petition lodged in Parliament this week to have same sex education in schools has drawn fierce opposition. Had this been available when he was at school, the tough emotional journey and prejudice he encountered himself would not have been so difficult.

James’ work to promote awareness and influence change in attitudes will go a long way to creating change and ensuring people living with HIV have equal opportunities and we can all contribute to this in small ways.

The full Stigma feature will be published exclusively in Issue Four of The Quarterly.

 

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