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LucyGransnet (GNHQ) Tue 01-Dec-15 10:17:38

Stop the stigma!

Today, 1 December, is World AIDS Day. As Terrence Higgins Trust asks people all over the world to wear the red ribbon and unite in the fight against HIV, we hear from Annmarie Byrne. She describes being diagnosed as HIV positive, and the subsequent stigmatisation she has faced ever since.

Annmarie Byrne

Stop the stigma

Posted on: Tue 01-Dec-15 10:17:38


Lead photo

Stop the stigma.

I am a white middle aged, middle-class grandmother of 67. 19 years ago my beloved husband, a funny, charming Irish man, died of AIDS and I was diagnosed as having the HIV virus at the same time.

After my husband died, I thought that was going to be my fate as well. I moved from Zimbabwe, where we lived, to the UK with my youngest child, as I had heard about the new drugs that were available and I hoped that I would be able to stay alive long enough to see my son through school if I could access them. My boy is now a husband and father and I am still here. But little did I know then, that although I moved away from my family, friends and network of support, the stigma so rife in my country was just as apparent here, in my adopted country.

This is what I wrote recently for Terrence Higgins Trust, for this World AIDS Day. It is as real now as it was then:

"Women are sometimes forgotten when we speak or write about HIV. We are considered to be a lower risk group than say gay men, and yet as women we are stigmatised as much if not more, as the media often portray us as 'promiscuous' and deserving of contracting this media particularly use words like 'karma' and speak of 'this disgusting disease'."

The media and social media talks of 'innocent victims' (children and people contracting the virus through needle stick injuries) as though the rest of us are some how guilty of something, and they talk of 'this self inflicted disease'. For women battling with a long term condition, the stigma surrounding this condition is often as bad or in some cases, worse, that the condition itself, which these days is often controlled by antiretroviral drugs.

I have had AIDS graffiti painted on the walls of my flat, my son has been surrounded by youths who told him his mother is a diseased old cow...all because I am living with this virus and have chosen to speak out publicly to try to change people's perceptions...

Many of us, like myself, have moved away from everything that is familiar to us, where sometimes the only thing familiar to us is the language, away from our support networks, to countries were we are stigmatised and vilified for having a virus, which is all that HIV is, not a moral judgement. We are told that things have got better and HIV is no longer any worse than say diabetes. I ask, when is the last time a person living with diabetes went to a doctor to be told 'don't worry, diabetes is no worse than living with HIV'? And until that happens, it isn't a level playing field.

If I was standing up saying I had breast cancer, I would expect (and receive) all the love and support in the world for myself and for my children. It isn't always like that for women living with HIV, many of whom are the most marginalised people in this country, struggling to raise their families and live good and positive lives. HIV is not just a medical condition, it is a social and economic condition as well.

I am a widow, a mother, a grandmother, a sister, a friend and I am also a woman living with HIV. I have had AIDS graffiti painted on the walls of my flat, my son has been surrounded by youths who told him his mother is a diseased old cow...all because I am living with this virus and have chosen to speak out publicly to try to change people's perceptions of HIV and to make a difference for the tens of thousands of women in the UK like myself who cannot speak out for fear of being ostracised by their families and communities.

On World AIDS Day it is commendable when people wear the red ribbon to commemorate us and those we have lost, but this virus doesn't just affect us on 1 December. We live with the stigma every day of our lives, and it is wrong. That is why I speak out and I hope that in some small way, I make a difference.

HIV affects us all, every day, every year, so please show your support and Stop the Stigma!

For more information on World AIDS Day or Terrence Higgins Trust, please visit the website.

By Annmarie Byrne

Twitter: @THTorgUK

Allotmenteer Tue 01-Dec-15 11:26:30

Well done for speaking out. The world is full of intolerant people who make no attempt to understand & appear to think that their opinion is the only one. I wish you well & admire you tremendously. Many hugs to a very brave lady.

cherryblossom Tue 01-Dec-15 11:52:35

Well done Annemarie, you are indeed a very brave woman and I wish you and your family all the very best for continued good health. I have had and pray survived breast cancer and received love, support, care and fantastic medical help by the bucket load. God Bless and stay strong, big hugs from me too xxx

WilmaKnickersfit Tue 01-Dec-15 12:58:38

Thank you for sharing this Annmarie.

I confess I wasn't aware of the stigma you and others face because as you say, in this day and age there's drugs to help manage the disease. I hope you can take some hope from knowing there's many more people who will not stigmatise people with AIDS. Now that I am aware of the stigma, I will watch out and challenge any prejudice I see. Stay strong. flowers

Stansgran Tue 01-Dec-15 14:30:05

I am puzzled as to how anyone knows as surely your health care records are not in the public domain. I've never heard of graffiti on people's houses in the UK and wonder where you live that this happens.

Lapwing Tue 01-Dec-15 14:48:38

Well done AnneMarie. Years ago ignorant people used to talk about cancer in hushed tones and avoid contact with sufferers. That has slowly changed - the next barrier to be broken has to be HIV/AIDS and your courage in discussing the issues will hopefully help to do this.

rosesarered Tue 01-Dec-15 15:05:00

Stansgran hmmmn yes, this question bothers me as well.

downtoearth Tue 01-Dec-15 15:16:22

I believe that Annmarie has spoken publicly and word has gone round by ignorant people...well done Annmarie..not so long ago Epilepsy also carried a social stigma

jinglbellsfrocks Tue 01-Dec-15 16:31:14

I think it might have been better to have kept quiet. Why invite trouble for her family? She is hardly going to change anything. It would take a lot more than a woman stating publicly, "I am HIV".

jinglbellsfrocks Tue 01-Dec-15 16:32:16

No way did epilepsy ever carry the same kind of stigma! Why would it?

cornergran Tue 01-Dec-15 20:20:13

I can't agree jingl. After an epilepsy diagnosis in his 30's my husband was sacked. Before DDA so no regress. Not for any safety fears, his was not a safety sensitive role but because his colleagues were afraid. We were never told of what. Yes, a while ago but has that level of fear - often the basis for stigma - gone? I don't think so from experiencing a wide range of reactions over the years. It has been noticeable in some that there has been an assumption of lowered cognitive functioning and even mental illness. We learned to be cautious about who we told. Children's friends have 'disappeared', neighbours became distant. No, not all but enough for me to believe the stigma remains with some people. It makes me very sad.

jinglbellsfrocks Tue 01-Dec-15 22:40:53

Yes, there's fear. But the stigma associated with HIV stems from the blame that is sometimes attached to the condition, by outsiders. Not that there necessarily should be blame, but the idea of it is often there. There can be no blame with epilepsy.

I don't think fear is the same as stigma.

WilmaKnickersfit Tue 01-Dec-15 23:42:19

Epilepsy has always carried a stigma right back to the ancient Greeks, when it was thought epilepsy was caused by being possessed by spirits good and bad. In most cultures epileptics were stigmatised or shunned, and even locked away in asylums or prisons. Until 1970 the law in the UK did not even allow people with epilepsy to marry. People often tried to hide their epilepsy to avoid being stigmatised. One of the children of the Royal family had epilepsy and was kept out of sight and only seen by family (can't remember which King it was).

Tegan Wed 02-Dec-15 00:08:05

That's the one that was featured in the Stephen Poliakoff tv drama series 'The Lost Prince'...I'd have to google his name though.

trisher Wed 02-Dec-15 09:58:45

Many illnesses carried a stigma in the past. Epilepsy was certainly one of them, TB another. Unfortunately there are still ignorant and ill-informed people who still have the attitude that ill people are to be shunned and feared. I don't think AIDs sufferers are alone in being picked on, I have seen parents move their children away from a child with severe eczema in case it was catching.

starbird Wed 02-Dec-15 11:43:31

It is unbelievably two faced for people in the UK to stigmatise any form of STD when society is so accepting of casual sex, whether straight or gay.
There is probably an underlying fear that it could happen to them - when they see that a decent, white, middle class person can be HIV+ve it brings it home to them that they are at risk, whereas they would rather bury their head in the sand.

WilmaKnickersfit Wed 02-Dec-15 14:32:05

Tegan I looked it up and it is Prince John, the youngest son of King George V. smile

downtoearth Wed 02-Dec-15 15:12:31

my daughter had epilepsy and also severe psoriasis not only on her body but scalp and hair line and was very visible during a flare up peple would move away or stare and comment and ask is it catching....we where told by the obstetrician who one would have thought enlightened that epileptics shouldnt be allowed to be pregnant the so called enlightened 1999...

Tegan Wed 02-Dec-15 16:09:10

If you haven't seen it it's worth seeing Wilma; was at the time when Poliakoff was making really good programmes.