Wednesday, July 18th, 2018
The Catwalk for Power, Resilience and Hope – an initiative started by women with HIV in London for International Women’s Day 2018– is going global next week with a workshop at The International AIDS Conference, in Amsterdam. Here is Laura’s account of why the Catwalk for Power is important.
After diagnosis, I lost my confidence and self-esteem. I couldn’t get myself to think I deserved the best in life.
Being part of the Catwalk for Power was transformative, it was organic; it was us, women living with HIV, everyday women who can often be overwhelmed with social inequalities and intersections that can make us underestimate our abilities, who lead and created the event. Everyday women who sometimes forget how much skills and resources we have as individuals and as a community,
When we started with the idea of the Catwalk for Power, we had no clue how exactly it was going to pan out, as we had no blueprint and we were struggling with finances. But we used our life experiences as individuals, mothers, professionals, peers, self-managers, activists etc., as we went on from organising one workshop to the other.
We all had journeys of self- discovery, finding out what we had forgotten we could do, what we didn’t know we could do, or reaffirming what we knew we could do. Using validation, and encouragement, we gave each of us a chance to participate and make decisions and contribute according to our abilities, taking on bigger roles, building confidence. Week after week, we were like flower buds opening up a little bit more
We learnt, we socialized we had fun, we challenged each other and we supported each other. Naturally we had moments of doubt and dips in confidence, but we found innovative and creative ways around them. As always, we were resilient and determined to self-care, look after ourselves, and see ourselves as deserving women, who often put other people first.
We had a variety of workshops to give each woman a choice and a chance to express herself the best way she could: we did hand crafts, watched films, discussed and found spaces to play, to be ourselves, ease off.
On the 7th of March 2018, the day of the Catwalk, for the first time since I was diagnosed I felt pride! Pride at being a woman living with HIV and having the opportunity to be part of this incredible group of resilient women who created a valuable safe place. By creating the Catwalk, we invented a space where to meet each other, search, find, be creative and empower ourselves,
We all strutted our stuff on the catwalk that day, even those who had no plans of walking until then, did: because at that moment, we realized that we are all deserving. We are already enough as we are. We are truly worthy.
Now, I will be part of the delegation taking the Catwalk for Power to the global scene at the International AIDS Conference in Amsterdam – and yes you can still support us by donating here: https://www.justgiving.com/crowdfunding/catwalk4power. This is something that a year ago I would not have believed I could do… I am now looking forward to the future, full of possibilities, my personal life, career and outlook in life have changed because I have finally started to believe I truly deserve it … this is what the Catwalk for Power has been about for me: we didn’t wait for anyone; we did it ourselves by ourselves. We created an enabling environment as women living with HIV to remind ourselves of who we really are, finding the power within ourselves and our community as women!
What we achieved was a big lesson for me about the power of grassroots, taking ownership, creativity, community, sustainable women spaces, collective will and partnerships.
WE ARE HERE!
Bakita, the activist and young poet who introduced us on the night said; “WE ARE TAKING UP SPACE” because THE POWER IS OURS
Commissioners and providers of services, policy makers and all other stakeholders need to work in partnership with women living with HIV to actively support and fund sustainable women centred peer spaces. These spaces are essential in building women’s leadership and capacity to effectively participate in the decisions affecting us, and in enabling us to live well with HIV
The Catwalk of Power Workshop
22nd International AIDS Conference – Amsterdam
Tuesday 24th July
11:00 am 12:30 pm
Global Village Youth Pavilion
The Catwalk for Power is a collaborative initiative supported by Act Up London and Positively UK.
Thursday, March 8th, 2018
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:
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 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
Monday, March 5th, 2018
— Madam Storm (@MistressBKnight) March 4, 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 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
Wednesday, January 10th, 2018
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.
Please contact email@example.com for more information
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.
Wednesday, December 13th, 2017
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:
It will be a great opportunity to meet other women with HIV who are mothers or want to be mothers.
Lunch and Refreshments will be provided. Advance booking is required, reasonable child care costs and travel expenses will be reimbursed
Thursday, August 17th, 2017
It is that time of the year again… as the days shorten and we start heading towards autumn… it is the perfect season to give some thought to what happens between the sheets! Wouldn’t we all like something, or someone, to keep us warm during the cold months…? Even if it is the buzzing of a faithful vibrator… or the purring of a lovely feline!
Good sex, intimacy and sensual pleasure are an important part of quality of life, but it is very rare that we give ourselves space to think about them. Sex is powerful. It underlies so much of our lives, who we are, and what we do. However, we seldom have opportunities to talk openly about it. Having HIV, and many of us having acquired HIV through sex, complicates things even further. However, I firmly believe that HIV does not have to be a barrier to a pleasurable sex life. Actually, it can become an opportunity to question the way that we had been having sex in the past, and the choices, or lack of choices, we have faced dealing with sex. Maybe, if we had known how to have open and frank discussions around sexual relationships, and pleasure to begin with, we would have not had acquired HIV in the first place!
However, we cannot change the past: personally, I have had HIV now for over 20 years, and as I ride the roller coaster through the menopause, I would like to hope that there are still good times ahead of me! At 51 I do feel more assertive and in control of my life, my emotions and my body, then when I was in my 20’s or 30’s. But I still have to face that sex, pleasure, and especially female pleasure, in our society, and across many cultures, have been a taboo subject for a long time. Women’s social value and morality have often been measured through sexual control. So, as young women, we were asked to be virgins, or at least chaste or ‘not promiscuous’, while men were encouraged and admired for having many sexual partners. Those double standards, and the sense of being judged on sexual behaviour, still affect me and many other women.
Sexual control, and limitation of female sexual pleasure are among the main reasons behind repressive and coercive practices such as Female Genital Mutilation (FGM), which very often not only make sexual pleasure impossible for women, but can also cause major physical and psychological problems. Luckily FGM is now recognised as a form of violence against women and girls in the UK and is illegal.
Our ideas and feelings around sex are also affected by pornography. Most sexually explicit images we have access to are often from pornographic films that cater for male desire, and objectify and demean women.
Sometimes I wonder if there is a subconscious fear that if we were able to freely access liberated, mind shattering, earth shaking, freeing, unbounded, pleasure… we would all give up our day jobs, leave our families and our responsibilities to dedicate our whole being to the joys of sex… and the whole capitalist society would fall into pieces… I cannot help but think that there is still something quite radical and subversive in sexual liberation.
Anyway… when I was diagnosed HIV positive over 20 years ago in Italy, I didn’t receive any advice, suggestion, or space to talk about sex. It was almost implicit that since I had HIV, surely I should stop having sex! Who would want me, anyway!? And how could I consider to even risk exposing someone else to HIV?!? However, of course, being human, and only 30 years old… I still wanted to have sex! HIV, of course, doesn’t stop us from being sexual beings! Luckily when I came to London, the HIV clinic provided me with plenty condoms and lube and a pat on the back to encourage me to access women’s group at Positively Women. It was within women’s group that I started to feel I had a right to sex and also started to learn from other women living with HIV how to get about having sex with HIV. How to talk to my partners, how to negotiate condoms etc. It was the living example of other women, that gave me the confidence and skills I needed, so that I could also have a sex life, and a relationship, if I wanted one.
At that time Positively Women produced a booklet called ‘Sexual Healing’ where women living with HIV spoke openly about sex after an HIV diagnosis, and how they continued to claim their ‘rights to pleasure’, as HIV stigma was at its highest. I feel very proud that in spite of the incredible stigma around HIV and AIDS, during those years, I, and many other women, just went on and simply loved, enjoyed sex, formed relationships, broke up, started again, and some of us even had a few babies! All of this in spite of often being considered outcasts, ‘infectious’, and dangerous women. We carried on with our lives and quietly fought for our right to be human… which included the right to sex, pleasure and happiness.
Times have moved on; in the past few years we have learnt that actually, once we take ARV treatment and the virus is undetectable, we cannot pass on HIV. This July in Paris the International AIDS Society launched the consensus statement ‘Undetectable = Untransmittable‘ (also known as U=U) which has been supported by leading HIV scientists and over 280 organisations from 34 countries. It is absolutely fantastic that we now live in an era in which people living with HIV can finally feel free from being considered a threat to a sexual partner. However, I know that a lot more needs to be done to enable women living with HIV to have good sex lives. At Positively UK we use a ‘How are you? Questionnaire’, to find out how the people we offer peer support to are doing in all areas of their lives. As part of the questionnaire we also ask about sex life. We have started to notice that among women, especially older women like me, satisfaction around sex and relationships is extremely low. We don’t know why for sure, so many things could be at play: from the prevalence of intimate partner violence, to poverty, from the menopause, to the impact of stigma, and living with other chronic conditions on top of HIV etc. There may be so many reasons why so many women with HIV are not having the good sex and pleasure they deserve.
This is why Positively UK is running Between the Sheets, a one day event for women with HIV to explore issues around sexuality and pleasure. We hope that through the workshops on offer throughout the day to provide an opportunity for women to talk openly about sex and pleasure in a safe environment. To learn, or re-learn, about our bodies and minds, and what turns us on. To discuss self-love and creativity as avenues to pleasure; and of course also to have much fun and laughter, in the spirit of sisterhood and friendship!
written by Silvia Petretti
Between the Sheets
Saturday 30 September — 10:30am to 6pm
Travel expenses for people on benefits of with no recourse to public funds
Between the Sheets events were started in 2012 by Sahir House in collaboration with Community Health in Liverpool, to offer women living with HIV a safe space to explore issues around sexuality, intimacy and pleasure. Positively UK is proud to carry on this legacy!
Monday, July 24th, 2017
We extremely excited to announce that our women’s project, ‘Positively Women’, will be holding a Between The Sheets event on Saturday 30 September.
This will be a day event exploring issues around: pleasure, sex, relationships, intimacy, and self-love for women living with HIV.
The day will include:
When: Saturday 30 September from 10:30 to 5pm
Where: Positively UK, 345 City Road, London EC1V 1LR
Between the Sheets events were started in 2012 by Sahir House in collaboration with Community Health in Liverpool, to offer women living with HIV a safe space to explore issues around sexuality, intimacy and pleasure. Positively UK is proud to carry on this legacy!
Monday, July 17th, 2017
Having a baby can be an exciting time, but also one filled with apprehension. Every pregnancy can be different and with all the pressure put onto expectant mothers and new mums it can be very overwhelming. When you add HIV to the mix it can definitely become a time of deep anxiety.
The first thing to do would be to look after yourself in pregnancy. Listen to the advice given by your Midwife but if you are not in agreement and you are unsure about something always ask for a second opinion, and make sure that your questions and doubts are addressed. This is your pregnancy journey and it’s unique to you.
Nowadays being positive isn’t a problem when you become pregnant. Most women worry about issues such as: will my baby be positive? and will the medication affect my unborn baby? Well I can tell you that from my own experience there have been no ill effects on my children’s health. I have had three children since becoming positive back in 1997.
During pregnancy it is crucial to be on HIV medication. The aim is to have an undetectable viral load when you give birth, so the virus cannot be transmitted to the child. Undetectable means untransmittable: and this is true not only during pregnancy, but also for sex when you are trying to get pregnant!
It’s a good process to be able to talk to other positive mothers who have been through a pregnancy and come out the other side. This can help put the mothers mind at rest and give them a more relaxed outlook. If you like the idea of speaking to someone else who has had a baby while having HIV, you could get in touch with us at Positively UK and we could match you with a Mentor Mother, who will support you throughout your pregnancy.
All new mothers experience feelings of doubt. Especially if it’s your first child. Don’t be afraid to ask for help and advice. Babies just need cuddles, love, contact, food, sleep, clean clothes, clean nappies and to hear a comforting voice. Babies bond just as well through bottle feeding as they do through breastfeeding, it’s all about contact, cuddles and caring with mummy’s voice.
HIV pregnancy guidelines in the UK still recommend that mothers with HIV should bottle feed, if possible. Breastfeeding when having HIV, even if you are taking medication and your viral load is undetectable, still carries a very small chance of passing the virus to the baby. If you feel very strongly about wanting to breastfeed, please make sure you talk about it with your healthcare team, as it is important that you and the baby get closely monitored to minimise all the risks.
Once the baby is born you will be spending a lot of time with them. But you must remember that, when a baby is tiny, sleeping with them in the same bed can be dangerous. You can roll and suffocate the baby. It is always best to put your baby in their cot. Room temperature should not be too hot or too cold. Babies like comfortable clothes; you don’t need expensive designer outfits when they are tiny. It’s a waste of money. Just have enough changes of clothing for when baby is sick or their nappy leaks. Trust me nappies often leak.
Once you have had your baby always remember that the community midwife may not be aware of your HIV status. Only let people know information that you are comfortable with. If you don’t want to discuss your HIV status with a community midwife that is your choice. Be firm and don’t feel pressured into any situation.
Sleep is a big factor with a new baby. Sleepless nights are one of the things that you will experience with a new baby. So make sure when you get a chance to take a nap DO IT. If somebody can come along and watch the baby for a few hours whilst you have a lie down this really helps. Babies soon get into a pattern of sleeping more so don’t worry this stage doesn’t last forever.
Just make sure you enjoy every moment as children grow up so fast. Before you know it they are grown up and you will not believe where all that time went!
Let’s Talk Babies — Positively UK’s bi-monthly group for new mothers living with HIV will have an outing to Kensington Gardens on Friday 21 July. If you and your baby or toddler would like to join our group please email firstname.lastname@example.org or call Diana or Helen on 020 7713 0444.
If you are planning to have a baby or are already pregnant and would like a mentor mother to support you in your unique pregnancy journey please email email@example.com or firstname.lastname@example.org or call us on 020 7713 0444.
Thursday, June 29th, 2017
This is an important new report from the Women’s Health & Equality Consortium (WHEC), of which Positively UK is a member, based on 9 years’ research on women’s experiences of mental health and seeking help. It highlights the importance of women only spaces, and specialised services, such as our Women’s Project in improving the mental health of women especially those who experience several layers of exclusion: such as women who live in poverty, BME women, and women living with HIV.
Monday, June 19th, 2017
There is no feeling tougher than the feeling of being alone, of being the only one. Be that feeling that you are the only one struggling after the breakup of a relationship, or the only one struggling to pay bills, or leave the house because of the ever present fear of discrimination or bullying – be that in the street or in the workplace.
Feeling alone is devastating, it often leads to a deeper depression and feelings of isolation.
Why me, am I the only one?
For much of my younger life living as a woman who happens to be transgender and HIV positive, these were questions I asked myself on a daily basis. I felt that maybe if I were just trans or just HIV positive then perhaps I could find a spiritual or nourishing home, perhaps a support group, or somewhere I could share my concerns and fears. But there were no support groups for trans women living with HIV, I wanted to share my feelings but also laugh and build friendships and a support network.
I have been positive for almost a quarter of a century, almost half of my life and for a great deal of that time I felt alone, very alone. I would go to support groups but always felt on the outside, people didn’t understand my ‘being trans’ or people didn’t understand my being ‘HIV positive’. Sometimes people would say to me,
“This is a space to talk about being HIV not being trans so please don’t confuse matters”
“This is a trans group to discuss trans politics and campaigning, you’re the only one here who is HIV positive and it takes up too much precious time just for you.”
There is a much longer list of things that people have said to me over the years but that is far too toxic to give life to here, suffice to say that it often felt spiteful and cruel, it usually reinforced my being alone and it made me feel outside of all my potential communities unless I kept parts of me quiet or secret. I couldn’t find support through the trans community or through the HIV support networks. I was often told that I was the only one attending that particular clinic, I truly believed I was alone.
I learned not to talk about my HIV status, I accepted that I would make weekly, then monthly and now yearly trips to see my HIV consultant but outside of these trips my HIV would not exist. I stopped trying to make contact with other trans people who may be HIV positive and stopped attending women’s support groups. Back then, even ten years ago there was still some hostility towards a trans woman being present in a women only group, my womanhood frequently questioned and my authenticity became the focus of my being there, not my HIV status, or its stigma, or my rejection and my complete lack of intimacy with another. For over eighteen years of my HIV positive reality I didn’t speak to a single trans woman who was also HIV positive.
When we look at global statistics we know that there are many others out there like me but somehow for most of those years we were prevented from connecting. The rampant transphobia within society meant that people, both trans and cis, would feel that being trans was tough enough without anymore added pressures, such as being HIV positive, so people kept it secret and other people who weren’t HIV positive didn’t want to address it or speak about it. Sometimes I was asked to speak about being trans but not about being HIV positive. Far too often in HIV clinics, conferences, spaces I would be faced by ignorance and told that no one had met a trans person before so they couldn’t give any advice about hormones, safe sex or support networks. Sometimes clinicians advised me to set up my own group, odd when back then I needed support and not a network to build.
Over the last few years that has started to change, slowly but surely. Groups like Gendered Intelligence, Mermaids and cliniQ to name a few have fought brilliantly for space; often starting out as voluntary groups they now provide far safer and informed spaces in which trans people can meet, talk and socialise. But still there is a gap, a space where HIV positive trans women can meet up, have fun, talk about their lives and generally support each other through friendship, solidarity and peer support.
A new initiative set up by cliniQ and Positively UK called ‘Positively Trans‘ is having its launch on the 15th July at 345 City Road, London EC1V 1LR. It is set to be a day where trans women living with HIV can meet, chat and have a few hours of pampering, yoga and brunch. A chance to share experiences or just enjoy being with other women who understand, a chance to make new friends and hear their stories and experiences.
‘Positively Trans‘ will run from 11am until 4pm and will be facilitated by trans and cis women who are either HIV positive or who work in and around HIV and sexual healthcare, such as Michelle Ross the cofounder of cliniQ.
This is a wonderful initiative and opportunity to meet other women living with HIV and to have a few hours away from the stresses and strains of the world, perhaps the difficulties of transitioning or the toughness of dealing with the stigma we as trans HIV positive women face.
I still face that, not every day or every week perhaps, but still I’m often written out of debates, or reduced just to being a set of risks, or worse as a victim. I’m often politely stigmatised and often still feel alone. I am really looking forward to meeting with the women who attend and I ask any trans woman out there who is living with HIV to try and attend, lets come together and share out the weight of the issues we have to face and live with, in a nourishing space where we can laugh, talk and build bonds.
Wednesday, June 7th, 2017
Susan Cole is an activist and feminist mother of four. She is the Community Engagement Officer for NAT (National AIDS Trust) and is on the steering committee of Positively UK’s Women’s Project.
Women’s rights are human rights. Unless of course, you don’t think women are human. Increasingly, as we’re bombarded by commonplace casual misogyny, I’m feeling there are some who don’t regard us as quite human. We hear a world leader talk about grabbing women “by the pussy” and watch as women’s reproductive rights are eroded internationally. Women living with HIV seem to be particularly vulnerable to having their rights abused. Let’s end this now.
1 in 4 women will experience domestic abuse in their lifetime in the UK. This shocking statistic is even higher amongst women living with HIV. A study at Homerton Hospital found that 52% of women with HIV had experienced intimate partner violence. HIV stigma and self-stigma compound this. The threat of HIV status disclosure can have a devastating impact on feeling sufficiently empowered to leave an abusive relationship. Pervasive psychological abuse can strip away self-confidence, leaving women even more vulnerable.
I hear gut wrenching stories of women living with HIV having their rights violated, in a variety of ways. Spurious threats of criminal investigation for HIV transmission. HIV statuses being dragged through the Family Court. Discrimination in the workplace and in health care settings. These outrageous violations of the rights of women living with HIV, often fuelled by sexism, must be challenged.
One way to fight back is to know your rights and feel sufficiently empowered to demand them. You’re protected by law from HIV discrimination in a variety of settings, including the workplace and in healthcare. Abuse motivated by your HIV status is a hate crime. Your HIV status should not be relevant in family cases. You have the right to HIV treatment in the UK regardless of your immigration status. And it’s important to know that domestic abuse does not just mean physical violence, but also psychological abuse and coercive control: all are illegal.
At Positively UK’s Women’s workshop: Our Rights on 24 June, women living with HIV are coming together to increase their awareness of their rights. It will provide an empowering opportunity to increase assertiveness and ability to advocate, as well as share stories and ways of overcoming difficulties with other inspirational women. It’s open to all women living with HIV.
In the words of Angela Davis “I’m no longer accepting the things I cannot change. I’m changing the things I cannot accept”. Let’s work together to end the abuse of rights of women with HIV.
The Women’s Room ‘Our Rights’ workshop will be Saturday 24 June from 11am to 5pm
at Positively UK, 345 City Road, London EC1V 1LR,
please email us if you would like to speak to another woman living with HIV or come to one of our groups:
email@example.com or firstname.lastname@example.org.
Monday, May 22nd, 2017
[Content Note: This blog post contains discussions around domestic violence]
Ms A.L.L. is one of the regular participants to our monthly group The Women’s Room. In this blog post, she shares some words of advice on how to deal with domestic violence and the terrible effects it has on our health and self-esteem.
As women with HIV it a is well known fact that we are at higher risk of mental ill health including depression anxiety and low self–esteem, than the general population.
In 2013 Positively UK surveyed people living with HIV around mental health and 70% of the women who responded said that they had struggled with poor mental health, and that this had often lead to missing doses of their HIV medications, or not taking good care of their health in general.
Sadly women with HIV still face instability, stigma and discrimination, and high levels of poverty and gender based violence women and often immigration problems. All of this can lead to emotional problems, to say the least.
It is well known that abuse within a relationship manifests in different ways, and it is often the main factor of depression, anxiety and other mental disorders. It can lead to insomnia, self-harm, suicide, eating disorders and misuse of alcohol and drugs.
If you’re diagnosed with HIV your partner can use this to abuse you even more. For example, by:
If you have been diagnosed with HIV, you could be extremely vulnerable, and less likely to report it to the police.
You might feel a sense of shame because of the stigma attached by society and powerless.
Moreover, some service providers are likely to be more problematic, due to stigma (see also the report by Women’s Health Equality consortium from 2014 I am More Than One Thing):
Do not blame yourself your mental health difficulties, or the abuse you are facing are not your fault, and you are not responsible for the abuse: the abuser is.
You are entitled to help, so seek it as soon as possible, it’s your right to live a happy and fulfilled life.
Many women living with HIV have found useful talk to others in the same situation and accessing peer support groups. Our next group The Women’s Room will be on the theme of building up our Self Esteem, which is always an important step in improving our emotional wellbeing and seeking help if we are facing an abusive relationship.
The Women’s Room ‘Growing our Self Esteem’ workshop will be Wednesday 14 June from 5pm to 8pm at Positively UK, 345 City Road, London EC1V 1LR, please email us if you would like to speak to another woman living with HIV or come to one of our groups: email@example.com or firstname.lastname@example.org.
Monday, April 10th, 2017
I am trying to remember what it was like with me bringing up my two sons, one now a teenager of 15 and the other an ‘adult’ of 18! It all seems a blur really but all I know that looking back it seems long ago until I look at their baby and toddler pictures and wish they were that age again. Some of you may empathise with my feelings others will be thinking I am mad to think that because your reality right now is very different.
Let me try and guess what is going on – lack of sleep, exhaustion, seemingly endless chores of feeding, changing diapers, laundry, milk feeds or real meals, drama around bedtimes, sudden temperatures or other illnesses or falls that send you helter skelter to your nearest A&E, and on and on it goes. And then you meet someone like me who has perhaps seen a lot of it and they say ‘oh the joys of motherhood!’ and you are like ‘Joys?’ ‘What’s that got to do with it?’
Let me paint another scene; day time with children’s TV (it was the tweenies in my time) that signalled that your toddler was awake and had switched on the telly themselves. That’s a milestone! There plenty of others from when they first hold their up, sit up, pull themselves up to stand and cruising along furniture, walk, eat solids, speak something intelligible, ask for things, delight at seeing your face if you have been away. There’s a lot that goes with recognising and celebrating these achievements.
The ages between 0-5 are by far the best in my opinion in parenting. That is the window period any of us have to make a mark on their development. They do grow and develop regardless but your influence and input at this age will have a lifetime impact. The variety, quality and quantity of experiences you give them, the quality of nurturing and nature of your relationship with them and the time you invest in these things, will all work together to bring them up into a well-functioning adult. Primary school helps during the childhood years 6-12 but remember it all starts in the home and with you ‘Mum’ whether Dad is in the picture or not. There are the teenage years (a topic for another day) but if you do not do the hard work now, then you will have challenges then.
There is a lot that I was able to do just because I could. I was an immigrant, was not allowed to work, lived on a very limited budget but had loads of time on my hands. What I discovered was that there was plenty that I could do and tap into without needing to spend too much. Mother and Toddler groups, libraries, parks, museums were all places I frequented every week. We did not live in huge houses with loads of space; it ranged from one room, then two rooms before we graduated to a whole flat in a period of 8 years. Their needs are very different and when they were under 5 I meant the world to them. I was the one who knew every answer to every question and could come up with all sorts of magical experiences.
Children that age love to play, enjoy special time with their parents and grow and develop with new and interesting experiences and environments beyond the four walls of any room in their home. That is what Mum and Toddler groups are about. So come, Let’s Talk Babies! In a safe environment, meet other mothers with children the same age, with loads of experiences in the room to share and to learn from. The children will get involved in messy play, make friends, experiment with independence, sing at circle time and learn to share toys. Make a note in your diary for you and your little one to come to one of our sessions here are Positively UK. The next one is on 25th May 2017 starting at 10.00am prompt so we can finish in good time for those who have do the school run as well.
Tuesday, February 14th, 2017
This month at the Women’s Room, our monthly support group for women with HIV, we celebrated Valentine’s Day and gathered together to talk about love in all its aspects from self-love to dating, learning from past relationships and talking about HIV to partners. We were inspired by the campaign started by the International Community of Women Living with HIV (ICW) in 2015 ‘Love a Positive Woman: Romance Starts at Home’.
We know that many of us are interested in dating, by a show of hands on the evening, in our group of just over 20 women a third were in a relationship, a third were looking for a partner, and a third were not interested in dating. However, we all agreed we were all interested in the topic… as you never know! Unsurprisingly many of us had responded to the HIV diagnosis with strong anxiety around relationships. As one of the participants who had only been diagnosed for about a year put it: “HIV has made me reconsider my approach to dating, and I have decided to take a pause. HIV has given me an opportunity to reflect as I need to understand better where I stand and what I want.” Those words resonated with many of us. Following our diagnosis in many we have asked ourselves: “Will I ever have sex again?” “Will I be able to love?” “How can I have a relationship with HIV?”
Having been a self-help group facilitator of women with HIV for over 15 years, I feel like I am a bit of an expert, as I have spoken to hundreds of women with HIV about relationships, and I can tell you that actually many of us will go on having relationships, having sex, starting families etc. Actually often the experience of having to deal with HIV, will give us additional skills and insights to navigate relationships.
In 2017 we finally know that science has demonstrated that when we take HIV treatment and our virus is undetectable (which means there is so little HIV in the blood it can hardly be found) we cannot pass HIV through sex. The PARTNER study, which followed couples where one partner was HIV positive and one was HIV negative for over 4 years and included men and women, straight and gay couples, and counted over 58,0000 instances of penetrative sex without a condom, didn’t encounter one single transmission… I just love this statistic nearly 60,0000 condomless sexual acts with no HIV being passed… that’s a lovely thought for Valentine’s day… anyway I am digressing…
The important thing is the that PARTNER study, after all this sero-different jolly sex without condoms, showed ZERO transmissions! Alison Rodgers, one of the researchers presenting the study when asked to tell Aidsmap about the chances of someone with an undetectable viral load transmitting HIV, said “our best estimate is zero”.
As women living with HIV the evidence brought by the PARTNER study is incredibly powerful and liberating. However, the reality is that these findings are not common knowledge and the prospects of having to explain substantial scientific information to a potential partner can still be daunting to many of us. We still wish that more was done in the public domain to dispel common myths around HIV.
In the final part of the evening we a returned to the theme of self-love. In small groups we discussed all the beautiful qualities we recognise in ourselves, we named our natural gifts, and acknowledged the many positive aspects we manifest as acts of self-love. It was so heart-warming to go around the room and hear women say “I am good at making you laugh” “I am spiritual person” “I go to church” “I can teach you how to cook” “I like to listen” “I am passionate” “I like to have fun and dance until dawn” “I have a great smile.”
We also created a ‘Partner Manifesto’ making a wish list of characteristics we were hoping for in a partner. Some of the most important ones we named were being compassionate, kind, open minded, a problem solver, financially independent, and obviously somebody with a nice bum with whom we felt attraction and chemistry!
Finally, we also discussed what we learnt from our past relationships:
I must admit I was completely smitten by the evening. In so many years facilitating groups about love and relationships this was the first time when the conversation didn’t focus totally on HIV. All of a sudden we collectively realised that actually the most important matter when looking for a relationship shouldn’t just be weather our partners accepts the fact that we have HIV, but whether or not they are the right person for us. Just like before we knew we had HIV. Maybe the only difference is that we are a bit wiser.
As 8 o’clock was approaching, we quickly shared our best bits of wisdom on the topic of telling a partner that we have HIV.
The Dos of telling were:
As for the don’ts of telling partners, we didn’t have too many: just don’t rush. Do it when is right for you, for some of us that may be on the first date, and for others we may need more time. We must remember that there is no obligation to tell, if we are not ready, especially, now, as we know that when we are undetectable we will not pass HIV: it is up to us, when, to whom, and how we talk about our HIV.
Our next Women’s Room meeting will be on 08 March, on International Women’s Day. The theme will be: ‘Fulfilling Our Potential’ and we will look at opportunities to for self-development, training, volunteering, and developing our careers. For more information, please ring 020 7713 0444 or email Hrogers@positivelyuk.org or Donyanago@positivelyuk.org
Thursday, November 17th, 2016
Please introduce yourself in a few words…
My name is Shema Tariq. I split my time between working as a consultant in HIV at Mortimer Market Centre (London) and as an HIV researcher at UCL. For the past ten years, I have worked on improving the health and wellbeing of women living with HIV. I currently lead the PRIME Study, a national study looking at menopause in women living with HIV.
What is the menopause?
The menopause (or the ‘change’) is the time when women’s periods stop permanently (either naturally or because of medical treatment) and they lose their reproductive potential. In the UK alone 13 million women are going through or have been through the menopause, many experiencing symptoms and possibly facing other longer term health impacts.
What can we expect as women living with HIV during the menopause?
The average age of the menopause in the UK is 51-52 years. As women approach this time they may notice their periods get more irregular or heavier. Women commonly notice sudden feelings of being hot (hot flushes). Other symptoms include difficulties sleeping, feeling irritable, feeling low, aches and pains, dryness in the vagina, loss of interest in sex, and difficulty concentrating. Of course, not all women experience symptoms, and those that do might find that they manage their symptoms very well themselves.
Does the menopause differ for women living with HIV?
Some studies show that women living with HIV experience menopause earlier (by 2 to 3 years), and that they experience more symptoms. But there is still a lot of work to be done in this area.
We know that the risk of osteoporosis (fragile bones) is increased in HIV and in women after the menopause. So women living with HIV who have reached the menopause may be at particular risk of bone disease.
Finally, our research has found that women living with HIV may face challenges in recognising and managing menopause symptoms, not knowing if symptoms are related to HIV or the menopause, and feeling “stuck” between GPs and specialist HIV services.
What can help us, as women with HIV, going through the menopause well?
If you are worried about symptoms, then you can speak to your hospital doctor or your GP. They should be able to help you. Women who have troubling symptoms can take hormone replacement therapy (HRT). This treatment replaces the oestrogen hormone that is lost as we get older. It is safe for most women and your doctors can advise you about it. It is available as tablets, patches, gels and creams. It is safe to take with HIV medication for most women.
There are also things you can do to help yourself. Regular exercise, a healthy diet, reducing alcohol and stopping smoking may all help with symptoms and also make sure you stay healthy well into older age.
What is the Prime Study?
Our team are conducting one of the largest studies to date in Europe, and the first ever in the UK, looking at how the menopause affects the health and well-being of women living with HIV. The PRIME Study is recruiting 1500 women living with HIV aged between 45 and 60 from 20 HIV clinics across England. Women are invited to complete a short questionnaire, with some women taking part in an in-depth interview so we can find out more about their experiences. All participation is confidential.
Is it too late to get involved?
No! If you are a woman living with HIV aged between 45 and 60 then we need your help. Together we can find out how to improve the health and wellbeing of women living with HIV as they get older. If you are interested in taking part please speak to your HIV clinic to see if they are involved in the study, or email me at email@example.com
Where can we find out more?
For more information about the menopause then please check out these websites: