We’re Recruiting a Gay Men’s Programme Co-ordinator

Friday, June 29th, 2018

 

SALARY c £26,000 per annum pro rata, depending on experience
HOURS 28 hours per week
DURATION 1 Year fixed term contract

Gay Men’s Programme Co-ordinator:

We are recruiting a programme co-ordinator to build on our highly successful work with gay and bisexual men. This will include provision of one-to-one case work support, groups and workshops for gay and bisexual men living with HIV, managing a team of volunteer peer mentors, and strengthening links and referral pathways with other agencies. The Gay Men’s Co-ordinator is an exciting role at Positively UK, and coincides with the development of our new 5-year strategy, which will provide the post holder with the potential to shape the future development of the project.

Successful candidates will be:

  • Diagnosed, and living with HIV, for at least two years
  • Identify as gay or bisexual
  • A self-starter, able to work as part of a team and under own supervision
  • Experienced in providing support to people living with HIV or other vulnerable groups
  • Experienced in group facilitation

For an informal conversation about the role contact:

Garry Brough at Positively UK on 020 7713 0444

For an application pack:

Contact Nickesha on: 020 7713 0444, email: info@positivelyuk.org

Final date for applications is 9am on Thursday 12 July

Interviews will be held Tuesday 17 July

 


We’re Recruiting a Fundraising & Communication Manager

Wednesday, June 6th, 2018

Are you looking for an exciting opportunity to combine your fundraising and communications skills?

Want to make a positive difference to the lives of others?

 

SALARY £33,000 FTE (28 hours)
HOURS 28 hours per week, 4 Days Flexible Working Hours
WORKING DAYS Negotiable

Fundraising & Communications Manager Role:

Based in our office in Islington, the successful candidate will support the implementation of the charity’s Fundraising and Communications strategies. They will lead on income generation from corporate partners, charitable trusts and individual giving, while raising the external profile of the charity through our website, newsletters, social media and published materials.

Successful candidates will be:

  • Experienced in fundraising within the voluntary sector, able to both maintain and develop relationships with relevant partners
  • An excellent communicator with the ability to address the diverse audiences the role requires
  • A self-starter, able to work both independently and as part of the wider staff team

For an informal chat, contact:

Garry Brough or Silvia Petretti at Positively UK on 020 7713 0444

For an application pack:

Contact Nickesha on: 020 7713 0444, email: ncampbell@positivelyuk.org

Final date for applications: 10am on Friday 22 June

Interviews will be held on Wednesday 27 June

 


International Women’s Day – The Power is Ours

Thursday, March 8th, 2018

Ahead of International Women’s Day, on the 7th March, Positively UK’s Women’s Room and Act Up Women, held a spectacular event to celebrate the collective and individual power of women with HIV and to highlight the importance of Women Centred Peer Support services. The event featured collective poetry by women with HIV, the young activist and poet Bakita, and a mind-blowing Fashion Runaway where over 20 women strutted with pride, confidence and humour. Here is a summary of the welcoming speech by Positively UK’s Deputy CEO Silvia Petretti.

We are here to mark International Women’s Day, and it is important to remember the history behind what we are celebrating. International Women’s day was set in remembrance of strikes women workers set up in St Petersburg in Russia in 1917. Women were asking for better pay and better working conditions. It was the escalation of those strikes the brought about the October Revolution in Russia. One of the biggest power shifts in history. We must remember that as women we have a very long history of fighting for justice.

This fashion show is a humongous step for us as women with HIV, as openness about HIV can lead to being harshly judged, rejected, and even being at the receiving end of violence. The Catwalk is the fruit of over two months of workshops. We discussed, we wrote poetry, we watched films on the history of HIV activism, we stitched and we bitched, while sewing our outfits, we spoke to each other about women and leadership, we laughed and we argued! In this way we created our Fashion Show.

A few facts on women and HIV:

  • Globally Women are the largest group affected by HIV, 18 million of us have the virus
  • In the UK we are the second largest group with HIV 31%, although you rarely hear about us
  • 80% of women living with HIV in the UK are Black or from other ethnic minority groups
  • Poverty, and disproportional impact of welfare cuts create a huge burden on our lives
  • We experience racism and hostility towards migrants

Moreover, there is a strong link between HIV and violence against women. A study in Homerton hospital in Hackney reported a 52% prevalence of Intimate Partner Violence amongst women with HIV. More than double that the general population.

When we have discussions in our groups, as we support women to develop a better understanding of violence against women in all its forms – not just a black eye – but emotional and financial violence, coercion and control. If we ask for a show of hands on average in a group of 22 women 18 will put their hands up to say that they have experienced some form of violence.

But, there is also some great news, and in preparation to this event women wanted for us to focus on some of the good news.

Because of effective treatment for HIV, by taking pills religiously every day, we can expect to live long lives. Moreover we now have 100% scientific evidence that when we take HIV treatment the virus is controlled we do not transmit HIV. It is called U=U: Undetectable equals untransmittable.

As women with HIV we really want everyone to know this. So next time you have an informal chat with a friend, instead of talking about the weather… maybe you could say: have you heard of U=U? Do you know that people with HIV who are on medications cannot transmit HIV?

However, I need to add a caveat on my enthusiasm for HIV treatment, because I know that the pills that I have been taking for the past 18 years, to keep me alive, have not been studied on my body. A huge issue for us as women with HIV is what we call the Gender Gap in research. On average Randomised Clinical Trials, which are used to research the efficacy and safety of ARV’s, enrol only between 15% to 20% of women. No wonder many of us struggle with side effects. According to PubMed: out of an average of 15,000 research papers published on HIV every year only about 500 have women in the title. I can guarantee that most of those are about pregnancy, because as you know… as women, we only matter when we have babies!

Today we are having a Catwalk of Power because we want to challenge the notion that women with HIV are victims. We are not victims. From the beginning of the epidemics women with HIV have been leaders and agents of change. Positively UK was set in 1987, as Positively Women, by two women living with HIV: Jayne and Sheila, who realised there were no services that met their needs – as most services at the time focussed on gay men. Sheila and Jayne set up the ethos of peer support which is still our foundation at Positively UK 31 years later. By creating Positively Women, which later became Positively UK, Jayne and Sheila set up a very profound strong hold of power: collective power. And it is only through collective power that societal changes have happened in history.

We are having a Catwalk of Resistance because if we didn’t resist, we wouldn’t be alive, given the challenges we face daily as women with HIV. Also, the creative process behind this catwalk is in itself a vital act of resistance.

Finally, we are having a Catwalk of Hope because through profound hope we sustain the vision that together we can create a world where women with HIV live with dignity and respect and where we can all share of all aspects of power: power to make decisions, economic power, political power.

The power is ours! THE POWER IS OURS!

This event was only possible because of the solidarity, generosity love and hard work of some incredible people huge thanks to:

Act Up Women who funded the costs of the workshops and the event, especially Mare Tralla and Donna Riddington who co-facilitated all the workshops and donated their expertise, passion and humour as feminist artists. Please check Act Up’s website if you would like to get involved in Direct Action to address HIV and health injustice.

Madam Storm got us all the strutting power, and more, we are all changed women after learning catwalk skills form her. She is a charismatic coach, performer, international dominatrix, who has as a mission in life to unlock women’s potential. If you want to increase confidence in the shortest time possible check her website for Strut Masterclasses. You can follow her on Instagram @MadamStorm

The poet and activist Bakita stunned the room with her words of power. Follow her on twitter @BakitaKK

The British born Bajan poet Dorothea Smartt who enabled us to develop our collective poem.

Thank you to The Big Lottery who funds Positively UK Women’s Project.

Thank you to MAC Makeup and especially Abigail Rowley and her team for always supporting our events and making us all look even more fabulous on the Catwalk!

And of course, the biggest thank you to all the 25 women with HIV who strutted for International Women’s Day 2018 with all their power, and stated: I am here. We are here: The Power is Ours!

written by Silvia Petretti


Strutting For Power with Madam Storm

Monday, March 5th, 2018

 

“I AM HERE!” with this simple and powerful affirmation Madam Storm started our final dress rehearsal in preparation of our International Women’s Day event: ‘The Catwalk of Power Resistance and Hope’ on 7th March.

Madam Storm is an experienced performer, coach and international dominatrix, who has as a mission in life to work with women so that they can unlock their power. We reached out for her support as we were getting closer to the date of our event. The Catwalk of Power is the first time that a collective of women with HIV from Positively UK Women’s Room support group has done something so incredibly public.

On the 7th of March we will be performing a fashion show with a message, to remind the world that HIV affects women in the UK, and that in spite of great hardship, poverty, and intimate partner violence, we experience, women with HIV are beautiful, powerful and agents of change in the response to HIV and we are fierce warriors in combatting stigma.

We invited Madam Storm to our group because most of us have never walked on a catwalk or performed in public and we were obviously very nervous and really needed to super boost our confidence.
Madam Storm worked her magic, starting by making us create simple and empowering affirmations, such as: “I am beautiful” “I am cool” “I am unique” “I am free”. At the beginning of the workshop most of us were walking looking at our feet, seriously intimidated and scared. By the end we were walking tall, swaying our hips, stopping with a hand on our waist and a cheeky smile!

I didn’t know I could learn so much about Power and overcoming Fear just by taking a few steps in a room.

 

 

I have been working in support groups for almost 20 years, and have run innumerable sessions on self-confidence and self-esteem, and I had never seen such a palpable change in such a short time, just by saying with our whole being, with our bodies and souls “I am here. We are here.”

Today as I look at the feedback forms from yesterday I can see that all the women in the room, who spanned from women in their 20’s to women in their 70’s, shared my feelings:

“It was engaging, dynamic, and I learnt that I am beautiful, free and confident!”

“I will use the skills learnt here in the workplace, at home, in social gathering and church!”

The Catwalk of Power Resistance and hope is on:
Wednesday 7th March
at
Brixton East, 100 Barrington Road, London SW9 7NS

Read more about Madam Storm on her website here

The Catwalk of Power has been lead, organised and produced by women with HIV with support and solidarity from a group of activists and artists from Act Up Women


Gay & Bisexual Men’s Project Evaluation Report

Tuesday, January 16th, 2018

The evaluation’s key findings included:

  • The project improved people’s ability to live with HIV as a chronic condition. For most, reported self-satisfaction with their life increased markedly after accessing the services
  • Provision of information by the project was a key component in helping many to deal with their emotional challenges and accept their status, this being gained more through trust in others lived experience, rather than scientific or medical knowledge
  • Social support provided by the Recently Diagnosed workshop, the GayTalk group and social networking stopped participants from feeling “cut-off” and helped re-integrate them back into society
  • Project services helped those impacted by HIV stigma to normalize HIV and feel “it’s ok to be HIV positive”

 

This report presents the findings of the evaluation of Positively UK’s Gay & Bisexual Men’s Project.

The project was set up to provide support to gay and bisexual men living with HIV, a group who are vulnerable to stigmatization, isolation and lower levels of wellbeing. The project goal was to empower service users to successfully transition to effective self-management and independent living with HIV.

The project, commencing in June 2015, provides a range of one to one and group support interventions, delivered through a Gay Men’s Project Co-ordinator and supported by a team of volunteer peer mentors.

The evaluation was carried out at the end of year two of the three-year project, after 250 men had been supported. It was informed by quantitative and qualitative data, including an online survey completed by over 100 project participants.

Although HIV was found to be the main entry point into the services, there were numerous support needs beyond HIV. Many participants expressed mental health, social and economic needs that were either exacerbated by HIV or affected their ability to live with the condition.

You can view and save the report as a PDF here


A Catwalk for Power, Resistance and Hope

Wednesday, January 10th, 2018

A Catwalk for Power, Resilience and Hope: Positive Women’s Fashion Show

 

We are extremely excited to announce a collaboration between Act Up Women and the Women’s Room – Positively UK’s peer lead support group for women with HIV to organise an event for International Women’s Day 2018. We are planning to create a Positive Women Fashion Show and Party.

The aim of the event is to increase awareness of how HIV affects women in the UK, and to create an opportunity to portray women with HIV as strong, creative and resilient, and not as ‘victims’; it will educate and entertain, offer a platform to celebrate the collective and individual power of women with HIV, and highlight the essential role of women only peer lead space.

We will have a series of planning meetings and workshops for women to choose and design how the event will run, with music, spoken word and a ‘Catwalk for Power, Resistance and Hope’ Women with HIV will be at the centre and leadership of the planning, if they are not open about their status, they will also have the option of having someone else walk on their behalf, or create a mask/disguise. Women with HIV can also contribute by working behind the scenes with other organisational/creative roles.

The Positive Women Fashion Show planning workshops will be held at Positively UK with the support of ACT UP Women who will provide refreshments, travel expenses and their expertise as artists and activists – a crèche will also be available on the day.

This event is for all women with HIV in our diversity, and our allies: some of us have been positive for a long time; others are recently diagnosed. We have different desires, different pasts and futures, different ways of being sexual.

We are married, single, cohabiting, mothers, daughters, heterosexual, bisexual, trans and queer.

We are at different ages and stages in our lives; we are different races and different classes and come from different parts of the world.

Upcoming Dates

  • Wednesday 10 January — Women’s Room taster workshop session Beading and storytelling, from 5pm to 8pm
  • Thursday 18 January — 6pm to 8pm planning workshop
  • Saturday 27 January — Screening of At Up New York film: How to Survive a Plague with Q&A and Leadership Skills Workshop for women with HIV 12pm to 5pm lead by Angelina Namiba and Laura
  • Thursday 08 February — Poetry for Activism workshop with Dorothea Smartt 5pm to 8pm
  • Thursday 22 February — 6pm to 8pm planning workshop
  • Sunday 04 March — Dress Rehearsal 12pm to 5pm
  • Wednesday 07 March — Positive Women Fashion Show and Fabulous Party (Venue TBC)

Please contact speretti@positivelyuk.org for more information


My Pregnancy Journey after 40

Thursday, January 4th, 2018

In this blog, Helen shares her experience of being a mother and having a baby after 40 whilst being HIV positive.

 

My most recent pregnancy journey was in 2013/2014. I was then a 43-year-old women who never expected to become pregnant again in my forties. I honestly thought things had stopped working in that department. So, you can imagine the shock of finding out you’re having a baby considering my age. All my other children were young adults and I was expecting to become a granny at some point.

Most people were telling me to think wisely about having a baby ay my age. I’m so glad that I never listened to them. Having my youngest child was the best decision of my life.

As an experienced mother who had already had children whilst being positive the worries around HIV were not even a consideration. My main worry was my blood pressure and age. HIV just didn’t enter my mind.

The great thing nowadays is that you no longer need to have an elected caesarean section if there are no other complications apart from HIV. You can even have a natural birth if you have previously had a c-section. This is called a V BAC. If you have other complications you may still need another c-section.

I think my other biggest worry was how am I going to cope financially. Money is very often a consideration when you are faced with the prospect of having a child.

I have learnt that you should never let finances put you off having a baby. Life is precious.

 

Always remember that not all the healthcare professionals will automatically know that you are positive. I had a bad experience from a community midwife asking me why I wasn’t breastfeeding and what is that medication you are giving to your baby. She was very rude and judgemental.

When I told her, I was positive she wrote it on my notes and then had the cheek to phone me later that day asking if I could erase it from my notes, (I left it there). I think she asked a colleague and was told that she should not have done that so she was trying to cover herself. They never sent her to me again as I complained about her bizarre attitude.

If you are expecting visitors to the hospital once you have given birth make sure that you make the team aware that maybe not everyone will know about your HIV status. Ask for medication to be administered for yourself and your baby after visiting hours.

Let’s face it, hospitals are depressing places and you shouldn’t be in there that long. New mums will be apprehensive about feeding and changing the baby. Even little things like how to lay the baby down in the cot seems daunting. Years ago, you could stay in hospital for seven days and they would show you everything. This is no longer the case and they get you out as soon as possible.

Make sure you ask to be shown what to do, bring in your baby clothes, nappies etc.

Positive mums do get given free formula milk in the hospital but have some stocked up ready at home alongside a steriliser (steam ones are the best in my opinion.)

 

Its normal to feel very low a few days after giving birth. This is called the baby blues. A time when your hormones go haywire and changes are occurring after the birth. The milk will come in and can be very painful but this will soon pass and if you are not breastfeeding it will subside quickly. A few breast pads will be useful even if you don’t plan on breastfeeding as you will still have some leakage.

Remember that if the baby keeps crying there is usually a reason, wet nappy, sore tummy, scared, hungry, uncomfortable, too hot, too cold, but most importantly they might just want a cuddle.

If you don’t have any family or friends visiting this can also be a depressing time. In the next beds, you will see people bring the new mums presents and flowers. This can be annoying if you are all alone. But remember you are not alone you have the most important person next to you in their little cot.

 

Also, if you feel lonely and would like someone to be supportive you could get in touch with Positively UK Women’s Project and we could arrange for a mentor mother to be available to you, to share experiences and learn from each other.

I also used to worry about the side effects of the medication on my babies. Two of my children that I had whilst being positive are now 16 and 17. They are totally fine and have not had any complications.

So, my advice would be to not worry and enjoy the moment as it soon passes and they are grown up before you know it.

Positively UK is running a Pregnancy Journey Workshop on Saturday 20 January for women living with HIV to learn more about pregnancy, motherhood, and becoming a parent. The day will be facilitated by women living with HIV who have had babies and have been trained as Mentor Mothers, alongside a doctor and a midwife available for you to ask any questions you may have.


The Pregnancy Journey Workshop

Wednesday, December 13th, 2017

Pregnancy Journey Website - Saturday 20 January 2018

Being HIV positive shouldn’t stop women who want to, to be parents. With good treatment, care and support, women with HIV can expect to have a joyous pregnancy and parenthood just like any other person.

Despite this, many women may have doubts and/or questions about the implications of having HIV and becoming a parent. This is why we are running a one day Pregnancy Journey workshop, led by our mentor mothers – women who have been through pregnancy while being HIV positive – and with the participation of doctors and midwives, to support women who would like to know up-to-date information on HIV, pregnancy and parenthood.

 

On the day we will cover:

  • Pre-Conception: things to consider before getting pregnant, how to conceive safely, communicating with partners
  • Pregnancy: what happens during pregnancy, HIV treatment and the baby
  • Delivery: the options available, how to make choices
  • Aftercare: the mother’s health, your baby’s health, breast feeding and formula milk, building a support network

 

It will be a great opportunity to meet other women with HIV who are mothers or want to be mothers.

Date: Saturday 20 January 2018

Venue: Positively UK, 345 City Road, London EC1V 1LR

Time: 10am – 5pm

Please book your place on: hrogers@positivelyuk.org or Donyango@positivelyuk.org or call 020 7713 0444

 

Lunch and Refreshments will be provided. Advance booking is required, reasonable child care costs and travel expenses will be reimbursed


James’ Story

Monday, December 11th, 2017

James

Globally, there are 37 million people living with HIV. I am one of them and I want to share my story.

 

I was diagnosed HIV positive in the summer of 1996, aged 25. I got my diagnosis very early, within weeks of the original exposure. I have never suffered a day of ill health because of HIV, except for an exceptionally severe migraine shortly after infection, which was, most likely, my body “sero-converting” – i.e. starting to fight the virus.

I recall the day I received the news. It left me completely numb, both at the time and for years afterwards. I had no idea what to do with the information I’d just been given. It certainly didn’t feel like I was going to get sick or die anytime soon. I just went back to work at Roots and Fruits, wondering at the back of my mind whether it was even safe for me to be working in catering any more, serving food to people. It is safe, of course, and I knew that even then but it didn’t stop the worry.

Over the years I have been extremely lucky; my body has successfully kept the virus under control by itself for far longer than most people’s. The only impact on my life was a twice-yearly trip to the hospital for blood tests, which always came back with good results. HIV was nothing more than some words and numbers on the screen of my doctor’s computer and the addition of a bio-hazard sticker placed on any blood samples that are taken. (Such a ridiculous policy – as if the lab is going to take different precautions with my blood than they would with anyone else’s.)

 

All this changed in the Spring of last year, when my consultant raised the subject of finally starting treatment. She did so partly because my immunity – measured by “CD4” cells – was beginning to decline as it does for everybody as a natural part of the ageing process, but more so because the treatment guidelines were about to change. Previously, treatment was recommended only when CD4 cells had dropped to a level that indicates a risk of HIV-related illnesses. The new guidelines are based on a study that showed that early treatment, regardless of CD4 levels, gives massively better outcomes. The trial’s findings were so compelling, in fact, that it was stopped early so that participants in the control group could be taken off the placebo and started on treatment as soon as possible too.

For me, this felt like a huge blow. Starting treatment was a one-way door I didn’t want to go through. Having to take pills on a daily basis would give me a constant reminder about HIV. And it felt like a failure… the loss of my “medical miracle” status. I had fears about side effects, about whether I’d be able to adhere to the treatment, and what problems the drugs might cause to my wider health in the long term. However, after studying the research and talking with the amazing team at the clinic I decided it was the right time to start. I took the first dose on 24 June 2016; the day after the Brexit vote. My mood about that result very much matched my mood about starting meds!

The reality of being on treatment turned out to be very different though…

 

Firstly, the meds worked almost immediately. Like virtually everyone on treatment, the level of virus in my blood is now so low it’s undetectable, which means the virus can do no more damage. The meds work by blocking the process by which the virus takes over the body’s CD4 cells and converts them into HIV factories. By interrupting this process, HIV can no longer replicate itself and almost disappears – although it still hides out in lymph nodes and would come back if I stopped medication.

Being undetectable also means it is impossible to pass on the virus. Let me repeat that… it is IMPOSSIBLE for me to transmit the virus. No ifs, no buts.

The science is absolutely unequivocal and even the most cautious clinics now agree that U=U (undetectable = untransmittable). This is huge. It’s huge for public health, in that we now have a real chance to stop the epidemic by encouraging people to get tested and on to treatment. But it’s also huge for individuals like me, both physically and emotionally.

Becoming undetectable has lifted from me a burden of shame that was so overwhelming and suffocating I can’t believe I never had conscious awareness of it until it was gone. I used to worry if friends gave me their baby to cuddle, just in case it chewed my hand – like babies do – and maybe, just maybe, there’d be a tiny nick in my skin I hadn’t known about. Or if I cut myself when cooking I’d feel like the whole meal would need to be binned, even if no blood had touched the food. Before I became undetectable I felt dirty, guilty, shameful and unlovable. Worst of all, I thought I deserved to feel that way.

Over the past 18 months I have finally started to face up to the reality of having HIV. I have realised that the numbness I felt for 20 years was, in fact, my inability to deal with the enormity of the diagnosis. Ironically, the fact I didn’t need treatment compounded this because it enabled me to remain in a state of emotional denial. It seems incredible to me now (given my penchant for navel gazing!) that I could have been so disconnected from my feelings for so long.

 

And now? Well, life just gets better and better. I have never been happier. I have never been nor felt so well. I have never been so deeply content and living in the present. I have never felt so secure in my relationships and so connected to my friends and family. The constant low-level tiredness that I had grown so accustomed to has disappeared, now my body no longer has to fight this virus every single day.

And I feel so lucky and grateful. Lucky that my body was able to fight by itself until the meds got as good as they have. Grateful that I live in a country where high quality healthcare is free and available. Grateful that I have good support from people around me. Lucky that I haven’t even had the mildest side effects from treatment. Lucky that I can afford to live and eat well and take care of myself. The list goes on and on.

A few weeks ago I trained to become a peer mentor to support people newly diagnosed with HIV. The stories that others in the group shared were humbling and moving. Myopically, I had always thought of HIV as a gay issue. I had never considered what the experience would be like, say, for a straight man who lives with the complexities of having what has been stigmatised as a “gay disease”. Or a woman diagnosed during pregnancy and had to face her own mortality at the very moment she was bringing life into the world. Or a middle-aged woman who became HIV positive after sleeping with just one man following the end of a long-term relationship. Or the people who were diagnosed because of a late-stage illness, just weeks or months away from dying, were it not for today’s treatments. Or the people who don’t tolerate the drugs as well as I do and have to cope daily with unpleasant side effects. These are just a few of the stories I heard.

 

I came out as gay when I was 16. I believed fiercely at the time – and still do – that stigma, prejudice and misunderstanding can best be overcome by simply living life openly and without shame. Today, with this post, I am starting to apply those same principles to HIV. I am no longer ashamed of my status. Recently, I’ve started to disclose to more people and I’ve realised that with every person I’ve told, another layer of shame has lifted.

From now on I intend to live openly as someone with HIV in order to help break down fear and stigma and to educate people about the virus. Fear, stigma and ignorance stop people getting tested, but getting tested and getting on treatment early is the best way to both save individual lives and prevent the spread of HIV. PrEP (a daily drug that acts like a vaccine against infection) is widely misunderstood – and not just by the right-wing media. It needs to be made available as soon as possible, without pitting patient against patient.

 

Today, we have a chance of defeating this virus and this is me, standing up to play my part.

 


Reclaiming Our Humanity, Everyone’s

Friday, December 1st, 2017

Bakita Kasadha

By Bakita Kasadha

Bakita is an activist and consultant in the HIV sector and the European representative on Y+ Board (the youth arm of the Global Network of People Living with HIV).

Outside of the HIV sector, Bakita is a personal development trainer and poet – performing under the name BakitaKK. She is currently studying a masters in anthropology and community development.

Twitter: @BakitaKK
Website: bakitakk.com

“…during the initial stage of the struggle, the oppressed, instead of striving for liberation, tend themselves to become oppressors, or ‘sub-oppressors’.”
– Paulo Freire, Pedagogy of the Oppressed

 

I am not shy in making it known that I don’t think the UNAIDS 90-90-90 target is enough. Under this target the depression that might be triggered by ARTs or the self-stigma preventing a person with HIV believing they are deserving of a loving respectful relationship is not factored in. Under the current target diagnosed and undetectable is enough.

I would like us to move towards a target that includes quality of life. We need to think beyond pills and viral loads and towards rehumanising people living with HIV.

HIV is a health inequality and it is no surprise that certain groups are more likely to be impacted than others. These groups are also more likely to face at least one ‘ism’, ‘isms’ that limit our humanity and dehumanise us.

Equally, people living with HIV, researchers, those who lead peer-led support and charities in the sector do not exist in a vacuum. We are exposed to the same messages, systems and structures; unless we’re vigilant and make a conscious effort we run the risk of continuing to reflect the same discrimination in our advocacy.

Sometimes in our equality efforts and campaigns, we run the risk of fighting to have the same powers as those groups we consider oppressive, rather than challenging or changing the power structures. When our campaigns turn into something like that, they only end up serving those who look like us and experience life in a similar way that we do.

 

So if your advocacy dismisses the experiences of HIV positive people who were born in the 90s and noughties because they don’t seem as painful as the experiences as those who were adults in the 80s and 90s…

If your HIV advocacy involves young people, migrants and trans people only in conversations about their experiences as being young, migrants and trans people…

If your HIV advocacy ignores the unique journey of being born and growing up with HIV…

If your HIV advocacy leaves BAME women as an afterthought in research, representation and prevention…

If your HIV advocacy mutes the realities of AIDS-defining illnesses, because they’re not an ‘issue’ in your country…

If your HIV advocacy excludes HIV positive people who are detectable from discussions about safe and pleasurable sex…

Then I’m afraid there are a growing number of people who are just not going to put up with it. None of us should.

 

What may be referred to as “in-fighting” in activism, I would argue (instead) is a growing number of groups gaining a better understanding of how they are discriminated against structurally and seeing that reflected in our advocacy.

It’s time for introspection and to examine whether our HIV advocacy is actually advocacy for all HIV positive people, or for those who have similar lived experiences to ours. Let’s not sacrifice groups that are already ‘othered’ in general society.

It’s a simple idea, but the process won’t be so. Recognising others’ humanity will involve us diagnosing and unlearning the ‘isms’ we carry. Recognising our own, reclaiming our humanity will require us to challenge our internal voices that have dubbed us underserving for far too long.

 

I am hopeful, but it won’t be light work. We need to be in this together.


Now What?

Wednesday, November 29th, 2017

Now What?

  • The evidence of peer support, the benefits for people living with HIV, for the NHS and social care, and for the system are clear. We now need action to ensure peer support services in HIV are retained, and those at risk of closure, safeguarded
  • Government should send clear signals to local government and health services about the value of Peer to Peer support in sustainably improving outcomes in HIV
  • Sustainability and Transformation Partnerships should address HIV services and peer support within their plans
  • Local Authorities and Clinical Commissioning Groups should be given a clear mandate to commission HIV peer support services, as they do with other long-term conditions
  • GPs and other healthcare providers should promote access to peer support through social prescribing
  • Where peer support has been decommissioned it should be funded and reinstated as a priority
  • The local community of people living with HIV should be involved in developing and delivering these services

 

As part of a series of events to mark our 30th Anniversary, Positively UK have published a new report into the effectiveness of peer support.

The report was launched at an event co-hosted by the All Party Parliamentary Group (APPG) on HIV in Portcullis House on 27 November in Westminster. Hosted by Stephen Doughty MP, Chair of the APPG, the launch also heard from Allan Anderson, CEO of Positively UK, Dr Ian Williams from Mortimer Market and Becky, a peer mentor from Blue Sky Trust in Newcastle.

In the thirty years since Positively UK was founded, peer to peer support has helped to transform the lives of people with HIV. Living with and managing HIV can be challenging for many people. Whether it’s coming to terms with a new diagnosis, starting or changing treatment, managing relationships or talking about HIV. Peer support is a proven to be an effective way of enabling people with HIV to live well and manage their HIV. The report sets out the benefits of peer support for people living with HIV, impact up the system in terms of reducing demand on health and social care services and savings to the system.

The report concludes with a call to action for National Government to champion peer support and provide a clear mandate for the provision of HIV peer support with local authorities and clinical commissioning groups. It also demands services that have been decommissioned be funded and reinstate as a priority and local communities of people living with HIV be involved in developing and delivering these services.

You can view and save the report as a PDF here


Parliament Hosts Iconic AIDS Quilts 30 Years on From Government Tombstone Adverts

Friday, November 24th, 2017

The UK AIDS Quilt on display last year in St Paul's CathedralThirty years since the outbreak of the HIV epidemic, the UK AIDS Memorial Quilt will be on public display in Westminster Hall to commemorate the lives of those lost.

The exhibition “People and Parliament: Remembering 30 Years of HIV and AIDS” will see six of the quilts go on display, to look back at how far we’ve come with HIV since the 1980s, but how much more there is still left to do.

Positively UK is proud to be part of the coalition of charities that have worked to display this irreplaceable piece of international social history.

The UK quilt panels will be on display in Parliament for one week only from 27 November, including World AIDS Day on 1 December, as part of an exhibition looking at parliaments role in the HIV epidemic, from the iconic 1987 tombstone adverts through to present day home HIV testing.

The UK AIDS Memorial Quilt is an irreplaceable piece of international social history and tells the stories of people whose lives were lost at the beginning of the AIDS epidemic.

Hundreds of individuals made quilt panels in memory of loved ones who had died from AIDS in the 1980s and 1990s, inspired by a global project that started in America.

The historic display has been organised by a coalition of charities including George House Trust, Terrence Higgins Trust, Positive East, The Food Chain, Positively UK and Sahir House, with support from the All Party Parliamentary Group (APPG) on HIV – the oldest APPG. The charities hope the exhibitions will help remember those lost and raise awareness of HIV to younger generations.

HIV no longer stops those living with the virus leading long and healthy lives – but there is still much to be done to support those living with HIV, tackle stigma and diagnose the 1 in 6 who are unaware they have the virus.

Get involved on social media using the hashtag #AIDSQuiltUK

 

Stephen Doughty MP, Chair of the All Party Parliamentary Group on HIV said:

The exhibition is both a remarkable visual testimony to the thousands of lives lost to AIDS and an important reflection on Parliament’s role throughout the HIV epidemic from the iconic 1987 tombstone adverts through to latest innovations such as HIV home testing.

The UK AIDS Memorial Quilt is an irreplaceable piece of international social history which tells the stories of people whose lives were lost particularly at the beginning of the AIDS epidemic. This exhibition must serve as a reminder of how far we have come in treating HIV/AIDS in the UK and the important role which Parliament has played and continues to play in ending the epidemic, but also how much more remains to be done in the UK and globally.

Allan Anderson, CEO of Positively UK added:

There is much cause to celebrate advances in HIV treatment and care. Through the U=U campaign we’re raising of how treatments reduce the levels of HIV so that a person living with the condition has no risk of transmitting it to a sexual partner. People living with HIV now have a normal life expectancy as the general population and we’re getting more people tested than ever before. However we still need to remember how far we have come, those we lost along the way and take time to commemorate those individuals on World AIDS Day.


Testing Positive: Tim’s Story

Friday, November 24th, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Tim’s Story

My positive HIV test was part of a wider assessment following five months of tests and assessments to understand my poor health.

Prior to my diagnosis, my last HIV test had been completed some 6 years previously as I had never regularly tested and did not suffer from any STDs and was in good health.

The HIV test that confirmed I was HIV positive was taken by my regular GP as part of a series of assessments which over a number of months. I had been unwell for a while and I had lost weight, energy and motivation and was not generally feeling well. My health continued to deteriorate for several months before a HIV test was requested.

Once the result was advised, I was guided to Chelsea & Westminster Hospital for confirmation at the John Hunter Clinic. This was conducted on the following day of my original diagnosis and I was admitted into the Hospital with PCP Pneumonia.

I was shocked by the result. I was also disappointed with myself. I was part of the generation who could recall the 1980s “Don’t die of ignorance” and ‘Tombstone’ campaigns. I was uncertain about my future. I felt like the world had stopped and that was it.

My long-term partner has been amazingly supportive. He was tested and found to be Negative which brought its own challenges to our relationship but he has never stopped loving me nor helping me through this time.

I bought every HIV book I could find on eBay and Amazon in an effort to understand the literature around this subject. Indeed, I learnt quickly that this environment is changing with such a pace that older books (from the last few years) can be out-of-date as advances in medicines, treatment and research changes amazingly fast.

In addition, the NHS has been tremendous in providing counselling and one-on-one support through the John Hunter Clinic and the staff at the Kobler Clinic have been very reassuring. My Consultant has spent time answering my questions and providing care as required.

Positivity UK was a great peer support network after completing the “Recently Diagnosed” Course which opened my eyes to other gay men in my situation. This has been life-changing in bringing new friends who fully understand my position and can empathies with me. The monthly support group has expanded my knowledge of HIV such as medicine research and provided me with insights which have benefited my learnings with my condition.

I was diagnosed on the Thursday by the GP and on the Friday, at the Clinic, they started me off on Antivirals straight away. I was monitored at the hospital for several days whilst I recovered from PCP Pneumonia and continue to be seen by my Consultant on a 3-monthly basis until my viral load and T-Cell Count stabilizes.

My knowledge of life living with HIV was based upon the media images and my scant learning. Firstly, I expected I would die, and found it hard to accept that it was a chronic illness rather than life-threatening. I thought I would have legions on my face and body, and similar to Tom Hanks in “Philadelphia” would quite quickly deteriorate and die. I have learned so much from Positivity UK, reading about the subject and from my new friends. I was naïve and uneducated.

Secondly, I have learned from support of charity groups like Positivity UK that life continues and I’m more likely to die from smoking or being run over by a bus than from my HIV which has been invigorating. It has changed me: I live my life not in a hurry but with me as the priority. Good health and wellbeing will support my longevity.

Whilst the initial diagnosis is hard to accept, you have to look forwards and embrace life, and not focus upon what happened, why it happened and what could have changed. You have to accept that life is a journey and this is just one element of your life now and always, but YOU and you.

You also will learn that you aren’t alone: there are groups, charities and friends out there who will support you in this new world but it should not define you (unless you choose to).

Focus upon your own wellbeing, both emotionally and physically as YOU have to look after yourself and live life.


Testing Positive: Jane’s Story

Thursday, November 23rd, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Jane’s Story

I tested positive two years ago in November 2015.

I’ve always believed that everyone who is sexually active should check their sexual health. Especially nowadays with online dating websites and applications we are all more exposed to risk. I tested in my local Sexual Health Clinic. I had tested before when I started or ended a relationship and in a few instances when I had unprotected sex without knowing the status of my partner.

I am a heterosexual woman and I have a pretty standard and “risk free” lifestyle however like most girls of my age I dated and I had sex and while most of the times I used protection there is always that time a condom slips or breaks or that one time that you don’t use protection in the heat of the moment thinking: “oh come on, it cannot happen to me…”

It was a routine test. I had recently ended a relationship. I had suspected my ex-partner had not been completely honest with me so I decided to get tested for peace of mind. At first I was numb. I still remember every moment. Everything the nurses and heath advisor were telling me sounded surreal like I was just having a bad dream. Then the shock hit me the day after.

I am glad I was diagnosed in a sexual health clinic since I received immediately a lot of support. I had the finger prick test which gives you a result in a couple of minutes so I didn’t have to wait too long. Also the staff there was very supportive. They gave me the news in a very calm, respectful and empathic manner. They immediately “normalized” the diagnosis telling me that I was going to be fine and that nowadays there are plenty of medicines available with very few if no side effects. They also reassured me that since I was diagnosed just a few months from my infection the prognosis was very good and that my immune system was not seriously damaged yet.

The same day the health advisor suggested me to contact Positively UK since they offered peer support. As much as it did not sound of great comfort, in that moment the idea that I could contact someone in the same situation made me feel less alone and gave me some encouragement.

I started treatment three months after the diagnosis. Since my immune system was still very strong the doctor advised me that I could take my time and that there was no need to rush. I let Christmas pass and I took a bit of time to do some research on the various medicines. Once I made up my mind I went back to the clinic and I told the doctor I was ready to start straight away and so I did the day after. Looking backwards I would probably start even earlier now. The web is full of bad and outdated stories about side effects which can be scary and confusing. I had none of those side effects.

Starting treatment made me feel in control of my own health and gave me confidence around other people. I am aware that being undetectable the virus is suppressed so unable to damage my immune system so I can lead a healthy and normal life. Also being undetectable I’ve never felt being a “threat” to others or being “dirty and infectious”. It also gives me confidence when challenging ignorance from others.

My life actually has not changed much since my diagnosis. I never missed a day of work, I had a promotion this year, I still travel for work and leisure and I still have wonderful friends around me. From a physical point of view I am no different from when I was HIV negative. I have no side effects from medications, I am strong and healthy, I am actually in a better shape since the diagnosis motivated me to look after myself more.

I would be lying if I said that this was very easy. Emotionally it was hard at the beginning and I had low moments however most of it has to do with internalized stigma and attitude one has to life. Most people I disclosed to have been very supportive. In some cases I experienced some level of ignorance but every time it was an opportunity for me to educate others.

Everybody’s journey is different and people have different ways of overcoming obstacles. What helped me was connecting with other people living with HIV and getting peer support from charities like Positively UK. An HIV diagnosis can be very scary and isolating at the beginning, however there is support out there and in my case it was fundamental to keep an optimistic approach.

Most of the times self-sabotaging will be your worse enemy. Believe in the scientific evidence and reject old and wrong myths on HIV as this is now a very manageable condition with a near to normal life expectancy.


Testing Positive: Edwin’s Story

Wednesday, November 22nd, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Edwin’s Story

I tested positive in 2003 when I was admitted at the Aberdeen Royal Infirmary for a severe fungal infection. Before I got discharged, a consultant asked me if I would like to have a HIV test, and I agreed to it. When the result came, I was told I was HIV positive.

The test was the first I had had since coming to the UK in September 2002. The first test ever was done in Tanzania in 1995. I assume the result was negative because the test was a requirement for joining the country’s Intelligence Service, which I eventually was selected to join. However, I was not given the results.

So prior to testing positive, I just had one test in Tanzania, and the second one was in Aberdeen from which I tested positive.

I wasn’t really surprised because I used to lead a very risky lifestyle in Tanzania. Weird as it might sound but I had slept with over 300 women before coming to the UK in 2002. And just like many other young men over there, I hardly used condoms.

When I first got the result, I told nobody really. When I tested positive, I was sharing a flat with two other Tanzanians who were also my fellow university students. I chose not to tell them about my infection. The two people I felt so guilty not telling them about the HIV infection were my dad and mom, but I decided against disclosing my condition to them because it could have serious repercussions. To-date, HIV is hugely perceived as a death sentence, a curse.

I would say I just supported myself. I tried to get as much information about HIV as possible. Also, I made sure I do not miss my appointment at the local sexual health Clinic.

Another thing that gave me a lot of strength was my faith in God. Coming from a strong Christian family – despite having bedded over 300 women – I have always believe in the power of prayers. Not that prayers would have healed me but just getting the strength to cope with the HIV.

I started the treatment shortly after I tested positive. It has let me lead what I could describe as ‘normal’ life i.e. the only difference between a HIV negative person and I is just I am still HIV positive and they are not. Regarding U-U, it hasn’t made much difference to me because I would never have sex with a HIV negative person. But generally, it adds more meaning to the effectiveness of the treatments.

I had never thought of HIV before I tested positive. Crazy as it might sound, I used to fool myself that I had strong immunity that could overpower the HIV, which could explain why I rarely used condoms.

Although I had a cousin who died of AIDS, but it really didn’t get into my mind that I could contract the virus, hence no time to think about living with it.

If you’ve recently tested positive, this is what I’ve learned from my experience:

First, contracting HIV is no longer a death sentence as it used to be perceived in the early days.

Second, get into treatment.

Third, it’s okay to regret about mistake(s) done in the past which might have contributed to contracting HIV, but life must go on. It is important however, to lead a healthy lifestyle: eating well, doing exercises, avoid stress, and generally taking care of health – body and mind. If someone is religious, a good relationship with their Higher Being could prove quite useful especially if one couldn’t find strength in themselves.

Fourth, keeping oneself updated with HIV news, research, and stuff. Volunteering in the HIV sector could make a huge difference as it makes it possible meeting with other PLHIV. If no room for volunteering, then joining HIV organisations could also help.


Testing Positive: Marcia’s Story

Tuesday, November 21st, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Marcia’s Story

I was diagnosed HIV positive in pregnancy.

I would test before every new relationship, but I wasn’t asking my partners to test. I had only been condom less for three months while trying for a baby, so found out early.

Finding out the result hurt, but a lot of light bulbs went off in my head, like when I went through seroconversion and my partner trying to tell me but never getting there.

I treated this diagnoses like I had diabetes just got on with it. I think I had to support my family not the other way around. I had this new life I was going to have to look after as well as my first child I had no time to really think about it, that came later.

I started treatment straight away, as I was pregnant. Treatment meant having a life with my kids, so I did this religiously. I had no side effects and was just having a normal horrible pregnancy, morning sickness and cravings.

As for U=U, it’s the best thing ever. This has given me even more confidence in the bedroom, not that I wasn’t before I now have options on the kind of relations I have and with whom… anyone I chose to. I am in a committed long-term relationship with a negative person which shows the medication really works.

Living with HIV is very different to what I imagined it would be like when I was first diagnosed. It makes no real difference only if you allow it to.

Knowledge is power, this works in every part of your life so find out as much information on your health as you can. There will be a health team there to help and support you but at the end of the day its always your decision on your healthcare.


Testing Positive: David’s Story

Monday, November 20th, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

David’s Story

I was diagnosed as HIV+ at 09:05am, November 3rd 2014, aged 25. A bright morning with a cold, crisp breeze that let you know winter was around the corner. I had tested the week before in my local GUM clinic. At the time I would visit the clinic every 3-5 months for routine screening. I had been really unwell the month before with an unusual illness, that it could be HIV had crossed my mind, so I had my suspicions.

Suspicions however did not prepare me for the news. I was devastated. I was conscious of other STI’s, but did not think that HIV really effected young people. The previous few years I had been struggling with my mental health, unemployment and being unable to support myself independently. I had hit rock bottom. My diagnosis felt like evidence that I deserved the situation I had found myself in.

I knew that I needed to break down my barriers and ask for help. Through it all I have been gifted with great friends. I borrowed some money and spent two weeks visiting those closest to me. Getting the weight off my shoulders was the greatest thing I did in those early days. I do not think I would be alive today and flourishing without their love and support.

I started treatment 10 months later on my clinician’s recommendation, though if given the choice again today I would start immediately. Being on treatment helped me shed the shame around my diagnosis, I was taking control of my health and my life. I quickly became undetectable, and I learnt that If I maintained my treatment I would live as long as my peers and I could not pass on the virus: Undetectable = Untransmittable.

About a year ago I trained to be a peer mentor. I firmly believe that peer support should be offered and encouraged for all people living with HIV, especially at point of diagnosis. Working with other positive people, sharing our lived experience and supporting each other is profoundly empowering.

If you are a young person that has been diagnosed then seek out help! Contact your local HIV service and access peer support if it is available. Reach out to someone close to you. You are not alone, you can get through this and become a stronger person because of it.

When I was diagnosed, I thought HIV would tip me over the edge. But living with HIV and facing those challenges head on helped me develop the tools to transform the rest of my life. Three years down the line those dark days seem like they were in another life. I am a proud positive young man, flourishing in a new career. I am happy, healthy and own my HIV.


Testing Positive: Mohammed’s Story

Sunday, November 19th, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Mohammed’s Story

I would like to start my story by introducing self:

I am Arab Muslim Black HIV+ Gay guy

In the Arab and Muslim world, it’s known that if you are gay you bring shame to yourself and to your family. You will be disowned by your family, discriminated against by society and prosecuted by governments ‘in my country of origin its death penalty’.

I grew up and lived in a gulf country for more than 35 years, and that did not entitle me to citizenship or indefinite remain to stay. I had a residence visa which needed to be renewed every three years. Part of the renewal requirement is a medical check which includes an HIV test.

If the HIV result is positive, you will be deported from the country like a criminal with a big scandal and humiliation to you and to your family.

To avoid this, every time my visa was due for renewal, I come to London before hand and get tested at the Bloomsbury clinic.

June 2009 my HIV test result came positive.

All I could think of when I got the result is my family and my life back home. I was terrified and very scared. I had not time or chance to think about my health or treatment. I needed to run away, disappear and start a completely new life somewhere else.

The reasons I ran away, were the same reasons that gave me the strength to move to the UK and start a new life as asylum seeker.

I was alone in this, I had no family or friends for support. I could not tell anyone. The clinic provided me with counseling when I first got diagnosed. I attended one session then stopped. The councilor was white British who knew nothing about Arab and Muslim culture. He wanted me to focus on my self and well being, when all I could think of at the moment and I need help with is my family and how can I run away from home.

I should have asked for or provided with someone who could relate to my background. That would have been a big help.

I started my treatment 8 month after my diagnoses. I did not apply for asylum then and I had no plan. I wanted to have access to medication and be on a treatment plan in the UK in case I end up somewhere in the world with no access to treatment. I was really stressed out with this idea, I spoke to my doctor and explained that not having treatment is causing me anxiety. He then agreed to put me in early treatment.

I had no idea how my life would be living with HIV. But I had awareness before hand from all my previous visits to the clinic. I knew the difference between HIV and AIDS, I knew there is a treatment and I knew I am not dying. That was a big help for me to move one and concentrate on what matters and problems in hand.

It was a hard and a long journey but I now live my life normally like everyone else, without thinking of being handicapped with my HIV. I could only have this healthy life and peace of mind here in London. I am lucky and fortunate to have it. I cannot imagine how my life would have been back home or in the Gulf area.

I would advise anyone who is recently diagnosed to seek help ‘if needed’ wherever it can be found. There is no shame in asking for help. Also to remember you are not dying, there is treatment and hopefully soon a cure.

I would like to end my story by introducing self:

I am Arab Muslim Black Gay guy, Healthy Undetectable and I am not infectious or risk to others


Testing Positive: Juno’s Story

Saturday, November 18th, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Juno’s Story

I was only tested for HIV because my then partner became incredibly ill and was rushed into hospital. This was many years ago before the life saving drugs we have now. I knew that if he was positive then chances were that I would be.

Having the test and finding out a positive result was no surprise but still it left me numb. It was a different time and I became quite ill, I was also in my first year at university. I remember my overriding feeling was that if I was going to die then I would do so with a degree, that, I thought rather dramatically, could be etched on my tombstone.

It was the early 90s before the introduction of the brilliant, life affirming treatments we now have, I stopped smoking, stopped drugs and at the time drinking and I started to really look at my all-round health. I made changes, started running and exercising and thought about the food I was putting into my body. Back then, before drugs, I did what I could do to stay alive. I understood how precious and bloody wonderful life is.

Twenty-five years later I’m still here, thriving and adoring the simple fact that I’m ageing.

I’m in my fifties and still exploring new horizons. Making those changes back then has enabled me to life a fairly balanced life, I appreciate my health and still do what I can to improve the way I feel through diet and exercise. HIV gave me a bravery that I never had before.

My HIV diagnosis became a positive life-chance, I didn’t know how long I would live for, many back then died. But I made an active choice to grasp life and try to live in the present, I had the support of family and friends but more importantly, for me, I set life goals that were about living, not about a ‘bucket list’ to accomplish before dying. If you get a positive diagnosis, please self care, reach out to those you know you can trust and to others you may meet, get support and then allow your life to go back to its old pace or find a new pace but know that with the brilliant treatments we now have that there is no reason why your life cannot be both long and full of wonder.

Juno Roche
@justjuno1


Yoga: re-discovering physical and mental balance after an HIV diagnosis

Monday, September 11th, 2017

Silvia teaches Yoga at Positively UK every Monday from 6 to 7:30 pm. In this blog, she recalls how she started practising yoga, and how yoga has benefited her physical and mental health:

 

When I was diagnosed with HIV, over 20 years ago, I went through a profound trauma. It was terrifying. I was physically well, but I knew that HIV was inside me. It made me feel like my body was hiding a terrible enemy. When I started on the first gruelling regimes of Anti Retro Viral (ARV) medication, I also felt quite toxic, as I had so many side effects. Luckily the medication has vastly improved.

HIV had not only invaded me at a physical level, but also mentally. I had struggled with low self-esteem and depression, through my teens and twenties. The diagnosis exasperated those problems and I went though some really dark times. I initially experienced having HIV as a confirmation of all my worst thoughts about myself. I felt, worthless, damaged, tainted.

Self-Stigma was one of the first and most painful symptoms of HIV.

 

Somehow one weekend in 2000, I stumbled into a local Ashtanga Yoga class, in a rundown room at the Brockwell Lido, in South London. The room seemed to breathe, and sweat, as the practitioners moved from posture to posture. The yoga teachers, two black women, Jennifer and Sabel, had supple and toned bodies. Even when they didn’t move, there was an energy about them like two beautiful wild leopards that are about to spring and run. Their eyes sparkled, as they gave instructions, and supported students into postures. I was hooked, even as I panted and sweated and struggled through the positions. I was stiff, breathless, and very weak!

Through yoga I rediscovered the joy of being in my skin, flesh and bones. As I started to go to yoga classes more frequently, something awoke within me. Pure happiness of being alive. Lifting my arms, breathing: I felt all the cells in my body rejoicing.

Almost immediately yoga helped me re-connect to something within me which is strong, happy, stable and compassionate.

Soon I started practicing yoga first thing in the morning, every day, before going to work, as it helped me feeling well, and focussed.

 

Through years of practice my body and mind have drastically changed. I am 51, I have lived with HIV and Hepatitis C for over two decades. I have been through years and years of powerful cocktails of drugs to keep HIV under control, and I am still often surprised that I feel stronger, healthier, and more confident in my body now, than I ever had in my twenties or thirties.

Mentally I have also changed profoundly, I just don’t get caught up in my own thoughts the way I used to. I also look at my HIV diagnosis in a different way. I can see now that HIV was my first yoga teacher. It made me face my mortality, what in Yoga we call ‘impermanence’. Realising that ultimately I had no control, I could die any moment, made me value the life I have. It made me truly realise that we really only have the present moment. The Yoga Sutra of Patanjali, one of the most important philosophical text in yoga, starts with the word Now. ‘Now, in this moment, we start the instruction of Yoga’ – atha yoga-anuśāsanam.

HIV woke me up, and made me pay attention to my life, it made me realise I cannot take what I have for granted. Each and every moment is precious, and I am grateful to be alive.

 

Because of the huge benefit yoga practice has offered to my mental and physical health, since 2015 I have started teaching a community class for people living with HIV at Positively UK. Yoga is very expensive, and it can also be intimidating going to a yoga class if you have never done it, or if you have lost your confidence after an HIV diagnosis.

Through this class I want to share, in a safe peer space, the transformative experience of yoga. The class is free for people with HIV and everyone is welcome. No previous experience of yoga needed. The class is every Monday from 6pm to 7:30pm, at Positively UK, 345 City Road, London EC1V 1LR.

You can just drop in and try! If you have any questions about yoga and participating, please email spetretti@positivelyuk.org

I have been practicing yoga since 2000, with several teachers, mainly in the Astanga yoga tradition. In 2007 I have started practicing under the guidance of Hamish Hendry, one of the few teachers certified by by Guruji – Sri K. Pattabhi Jois – in Mysore since 2001. Hamish has supported and encouraged me to teach and share yoga with others.

In 2016 I completed the 200 hour Teacher Intensive with Richard Freeman and Mary Taylor – senior Ashtanga yoga teacher, with over 40 years of experience, in Boulder Colorado.

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