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:
firstname.lastname@example.org or email@example.com.
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: firstname.lastname@example.org or email@example.com.
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 firstname.lastname@example.org
Where can we find out more?
For more information about the menopause then please check out these websites: