Sunday, 19 June 2011

That I have been quiet does not mean our life has been quiet

Since I last posted much at all we have had the following happen .
Thinking we were OK, that yes we both had HIV but since Barry got well and I felt better since we went on the ART with the HIV meds we had a 'weather window ' a reprieve so  we could expect to be well for a few years yet?

So we continued to live our life to the full as always.
So we  started to demolish half of our house to re build it  as it was falling down and we have meant to do it for over 25 years
This was a very big mistake .

As shortly after we started Bary got diagnosed with Prostrate cancer and had to start treatment for this .
Prostrate cancer is not linked to HIV so he may well have got it anyway. Bu tit is very young to get prostrate cancer and people that live with HIV are  50 to 70% more likely to get cancer of all kinds, not just AIDS defining cancers.

So who knows if he would have had prostrate cancer if he had not had HIV?

Then I found I could not use my hands hardly at all and got diagnosed with Kienbocks's_disease

Which is a form of avascula necrosis , which some research thinks is linked to HIV and the ARV meds.

But the jury is out and more research needs to be done .
But basically for me I think it has to be linked.

But who knows?
All I know is Bary is now fighting cancer, I have Kienbocks - which is not good news considering I already have had an ankle fusion and have bad knees and difficulty walking so this was the last thing I wanted to happen .

But life goes on
What choice do you have?

HIV is for life - HIV is a huge learning curve.

New beginnings - HIV is a huge learning curve

I have not updated my blog for a very long while.
I apologise but in in the meantime I have been learning , learning about what living with HIV is really all about and how fruitless anger is. It does not matter who you got HIV from, we all got it from someone, and the chances are that, unless they are one of the very few, they did not want to get HIV either??

So in the last few months or so I have been quiet and learning.
Learning what it really means and from those who have been there long before me HIV had its 30th anniversary this  week.
And you know sadly it is only now sinking in for me that HIV  is my life now, and forever

Wednesday, 19 January 2011

What we face as women Living with HIV in the UK

Rather than reinvent the wheel I thought I would post here a speech given at The Sophia Forum Round Table meeting, at the House of Lords by Silvia Petretti on the 18th January 2011.

Silvia is a woman living with HIV who I count as a friend who I met through the National womans group PozFem UK.
She also works at Positively UK as Community Development Manager.

This speech gives a good idea of the issues facing women who currently live with HIV in the UK

I would like to thank the Sophia Forum for inviting me to speak today, and for all of you for being here.
I am a woman living with HIV and I work at Positively UK as Community Development Manager.

At Positively UK we speak to hundreds of HIV positive women every year. We meet them in support groups, through the help-line, we meet them in hospitals and during outreach to prisons. In spite of all of our efforts we only reach several hundreds of the over 21,000 women who have been diagnosed with HIV in the UK. And reaching those women is becoming harder and harder as funding for women’s specific services shrinks.

As you have heard from my colleagues as women living with HIV we face many challenges: Sophie has highlighted the challenges of those of us who go through the Criminal Justice System and Angelina the different layers and complexities that HIV adds to motherhood.

From a strictly bio-medical point of view many of us are doing really well. And I have heard so many times that HIV should be ‘normalized’ and treated like diabetes. But for most of us who are living with HIV in the UK I know that it takes more then pills to live with dignity and safety.

An area in which positive women find enormous difficulties is the area of relationships.

This is a sphere of particular importance for women. Of course every human being has a basic need of feeling loved and appreciated. However, this need is amplified for women. The way gender plays in society means that women still gain a lot of status through being in a stable relationship and having children. HIV on the other hand comes with an immediate loss of value as a person in society, and this on top of other socio-economic disadvantages women face.

The pressure of being in a relationship, combined with the anxiety of being rejected because of our HIV status pushes us very often into dangerous relationships.

2011 has started with some stark reminders of those dangers. During the Christmas holidays I was threatened with violence by an ex partner: the fact that I am a woman living with HIV, made me a potential ‘killer’ and of course of dubious morality. This was very much at the centre of the verbal attack and the threats of physical violence. In my ex-partner’s mind I obviously deserved to be treated like that because I have HIV.

I was shaken, and hurt, but thanks to the support of friends and family I was able to feel a certain degree of safety. For many women for whom HIV is still a dark secret to be protected at all costs, it would be impossible to talk to anybody about such an episode and this sense of safety would be unattainable.

When I returned to work I found out that another positive woman, a close friend, had been physically assaulted and beaten. Within the first few days in January I also received a phone call from a young positive mother who is in an abusive and violent relationship, which is profoundly damaging to her and her baby.

The truth is that hardly a week goes by at Positively UK that we do not hear of a positive woman being emotionally blackmailed, abused, threatened or physically attacked.

I have used my personal example because I want to dispel the myth that violence against women is something that affects only ‘certain’ women: the 'vulnerable', or the ‘African Community. I am afraid that among women with HIV in the UK this goes across class and colour: it’s part of our reality. I do also recognize that poverty, immigration issues, isolation and fear of HIV status being revealed: create insurmountable obstacles that lock positive women in these dangerous relationships.

I do not have a research paper to back this up. I have 10 years of experience working for a women’s helpline and facilitating support groups.

On a global level the UK through Department for International Development has widely acknowledged the strong link between gender inequity, gender violence and HIV. However this link has never been acknowledged in any national HIV policy strategy here within the UK.

At a very personal level I have asked myself: why has this happened to me? why is this happening to us as positive women? Are those men just individual ‘monsters? Who else, or what else, has a role to play in this? And I believe it is important to recognize that these are not isolated episodes but they continue to happen in the context of our societal views and attitudes towards women and HIV.

Today I would like to ask you here in this room, many of you being influential policy makers: what is your role in shaping those attitudes? What is your role in stopping violence against HIV positive women in the UK?

Obviously when HIV positive women face such complex and difficult circumstances as those I and my colleagues have highlighted it is not a surprise that our health, physically and mentally, is affected. Research shows that women have worst outcomes in regards to HIV treatment. This is due to several factors, including low numbers of women in clinical studies, and lack of studies focusing on women’s issues outside pregnancy. It is no wonder then that there are still only about 30 of us women who are fully open about our status here in the UK: just 30 out of about 33,000 women who have HIV here.

However, I know from the work we do that peer-lead support enables women to regain a sense of self-worth, and this has a positive effect on our mental and physical health. Peer support is important in enabling us to disclose our status, or in giving us the confidence to leave abusive or violent relationships. Being more open about HIV improves our adherence. Adherence means less resistance to treatment and no need to switch to more expensive regimes. Being successfully on ART, with an undetectable viral load, combined with openness about HIV status, also creates the foundation for preventing onward transmission. And we all know that new infections are very expensive to treat, as well as a personal tragedy. Finally, when women are appropriately supported in their psycho-social needs they require less face to face contact with their health-care providers. In brief: peer-led support for HIV positive women not only has health outcomes, but makes economic sense.

To conclude I would like to point out some recommendations which will allow us to continue to do our work, I also hope that this session will enable us to hear your ideas on other ways forward:

Firstly, we need some robust evidence to back our work. We need resources to develop participatory research around how gender, HIV related stigma and gender violence affect our lives as well as research on the effects of peer-led interventions.

Secondly, we need better partnership between the scientific community and HIV positive women. Scientific research, including clinical trials, should involve and support HIV positive women at every stage, from formulating questions, to collecting and analyzing data.

Thirdly, and most importantly, that support for women’s centred services and networks has to be long term and sustained, so that we, who are directly affected, can develop and maintain the strength to challenge negative societal views of HIV positive women. Stigma will end when we are visible.