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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Women with HIV: Time to Talk About Pleasure

Thursday, August 17th, 2017

Let's Talk Babies

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

at Positively UK, 345 City Road, London EC1V 1LR

Crèche available.

Travel expenses for people on benefits of with no recourse to public funds

Places are limited, please book by emailing Hrogers@positivelyuk.org or Donyango@positivelyuk.org.

 

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!


Between the Sheets 2017

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.

Between the Sheets

The day will include:

  • Silver Sex…. ie, Sex and the Menopause!
  • Creative Workshops: My Pleasure…
  • Sex Toys for Women
  • Our Bodies, Our Selves — understanding and exploring women’s sexuality after an HIV diagnosis
  • Self-Love & Make Up session

When: Saturday 30 September from 10:30 to 5pm

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

How to Book: email hrogers@positivelyuk.org or spetretti@positivelyuk.org

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!


Having a Baby Can Be an Exciting Time

Monday, July 17th, 2017

Let's Talk Babies

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 donyango@positivelyuk.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 hrogers@positivelyuk.org or donyango@positivelyuk.org or call us on 020 7713 0444.


Taking a Forward View on Women and Mental Health

Thursday, June 29th, 2017

Taking a Forward View on Women and Mental Health: Key Messages for Government

Taking a Forward View on Women and Mental Health: Key Messages for Government

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.


Positively Trans

Monday, June 19th, 2017

Positively Trans

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”

Or

“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.

Not one.

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.

Juno Roche

 

Positively Trans
on the
15 July 11am – 4pm
at
345 City Road, London EC1V 1LR

Just turn up on the day or register interest at gdrage@positivelyuk.org


Women’s Rights

Wednesday, June 7th, 2017

Susan Cole

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:
hrogers@positivelyuk.org or donyango@positivelyuk.org.


Travelling Abroad

Tuesday, May 23rd, 2017

Dear Jim

Simon writes:

Dear Jim,
I plan to travel abroad this summer for a holiday but have heard there are some countries that impose restrictions on people living with HIV. How easy is travelling with HIV these days and what should I consider when planning a trip?

Dear Simon,

Many people living with HIV travel regularly for holidays, work or to study, and in most cases HIV is not a barrier, but if you want a hassle-free trip it’s essential you do some planning before you leave as this could save you a lot of time and money if things go wrong.

Countries with entry restrictions

Although the number of countries limiting entry to people with HIV is decreasing, some continue to enforce some form of restriction. According to UNAIDS (aidsinfo.unaids.org) as of 2015, there are 35 countries which still have some restrictions, although this is down from 59 in 2008. These are mainly countries in the Middle East, North Africa and Russia. Five countries still have a complete bar on entry. These are Oman, Sudan, United Arab Emirates, Yemen and Brunei Darussalam. Restrictions have been lifted in recent years for the United States and China.

Whereas travelling for short stays (up to 90 days) is OK in most countries, if you are looking to emigrate, work or study in another country, there may be additional entry restrictions including the need to provide proof of your HIV status. The best way to find out what restrictions currently exist is to contact the embassy or consulate of the country you want to visit. If you are an EU citizen, or have the right to live in an EU country, then there should be no restrictions on travelling to another EU member state. Whether this will change post-Brexit is something we’ll need to watch.

If a country you want to travel to does impose some kind of restriction then you will need to decide if you want to take the risk of travelling there or at least how you can better manage that risk. It’s unlikely you will be stopped by customs or immigration, but if you are and they establish you are HIV positive, they may refuse entry and deport you.

Travelling with medication

One of the most important things to think about is how you are going to carry and take your HIV meds. If the country has HIV-related travel restrictions you may get questioned about your meds when going through customs. You can disguise them by putting them in a different container, a vitamin bottle for example.

Or you might take a letter from your doctor stating the treatment is for a chronic health condition and that the medication is for personal use – it doesn’t need to mention HIV. In this case it’s best to use the container the meds came in as it will have your name on it.

Make sure you take enough meds for the trip, and some extra in case of delays, and keep them in your hand luggage or some in different bags to avoid losing them if bags go missing.

Access to medical care and medication supply

If you need to get supplies of your medication after you’ve left home, you may find this very difficult or impossible – which is why it’s important to take enough with you. But in case this happens, make sure you have a record somewhere of the names of the pills you take as they may have different names in the country you’ve travelled to.

If you’re travelling in the EU and you have the right to live and work in an EU country, you can obtain a European Health Insurance Card. This isn’t essential for you to access HIV meds if you need them, but it will save you a lot of bother and extra paperwork if you do.

Travel insurance

Because modern HIV meds are now so good, most travel insurers include cover for HIV-related claims. Insurers will usually ask for your HIV status, but if you’re undetectable and on treatment, you shouldn’t have to pay much of a premium and some insurers do not charge any extra. Remember, even if an accident or illness abroad is not HIV-related, omitting to let your insurer know about your HIV status may invalidate your policy. There are companies that specialise in, or have experience of, insuring people living with HIV. You can find lists at aidsmap.

If you need to access HIV meds whilst abroad, an insurance policy that includes HIV-related claims should cover the cost of treatment (check the small print) and if the medication you need isn’t available in the country you are travelling to, the policy should cover the cost of shipping the meds out to you.

Vaccinations

It’s always important to check whether you need any vaccines for your destination and if already vaccinated whether these are up to date. Modern HIV treatments don’t interact with vaccines, and even most ‘live’ vaccines these days are fine if you’re living with HIV and on treatment. However, it’s worth discussing this with your doctor or someone in your HIV health team in good time before you travel.

Talking about your HIV when you get there

Finally, it’s worth remembering that people’s attitudes and levels of knowledge about HIV may be very different outside of the UK and to what you are used to. Be aware of this, particularly when deciding whether to talk about your HIV with guys you meet or hook up with. People in countries where homosexuality is less accepted, or illegal, are more likely to view HIV in a negative light, so be discreet.

 

If you’ve got a question you’d like answered around living with HIV, please email jfielder@positivelyuk.org


Don’t Suffer in Silence

Monday, May 22nd, 2017

[Content Note: This blog post contains discussions around domestic violence]

Don't Suffer in Silence

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:

  • Saying you can’t cope
  • Not allow you to go out alone because he is your carer
  • Speaking for you: “you know you get confused.”
  • Saying you’re ‘mad’
  • Saying you’re a bad mother
  • Deliberately misleading or confusing you
  • Withholding your medication
  • Coercing you to take drugs
  • Undermining you

 

Seek Help

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):

  • They might not believe you
  • They might only see you when your partner is around
  • They may accept his account
  • They might even feel sympathy for your partner
  • They might judge you

 

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: hrogers@positivelyuk.org or donyango@positivelyuk.org.


HIV Manifesto 2017

Tuesday, May 16th, 2017

#HIVmanifesto

Join us in challenging local candidates to pledge their support for people living with and affected by HIV. The general election is a crucial opportunity to raise the profile of HIV; please add your voice to our campaign.

We have come a long way since the 1980s. While stigma and discrimination remain, HIV is now a long term condition and individuals are living with HIV into old age. HIV affects individuals of all ages with 95% of people living with HIV of working age. HIV treatment in the UK is excellent, but not everyone living with HIV is doing well. The number of people diagnosed with HIV each year remains high and far too many people are diagnosed late. Services which help people living with HIV manage their condition are facing continued funding cuts.

We have come so far. We cannot stop now.

We are calling on the next Government to:

  1. Commit to tackling the stigma and discrimination faced by people living with HIV
  2. Fully fund HIV and sexual health services to meet the needs of local communities*
  3. Recognise the importance of prevention to a sustainable health and social care system by increasing investment in public health services*
  4. Equip schools with the resources they need to ensure that high-quality, age-appropriate, lesbian, gay, bisexual and trans (LGBT)-inclusive sex and relationships education is taught to all young people in all schools*
  5. Make PrEP available to all individuals at risk of HIV in the UK*
  6. Develop a fair benefits system that meets the needs of people living with HIV whether in or out of work
  7. Ensure that the health and social care system is equipped to meet the needs of a population ageing with HIV*

*The general election is electing MPs to the House of Commons, from across the UK. The House of Commons legislates for health and social care, and education, in England only. The devolved Governments of Scotland, Wales and Northern Ireland legislate in these areas.

Take action now

It’s time to pile on the pressure; will your local candidates stand with people affected by HIV?

There are some easy ways you can help put HIV on the agenda in this election.

  1. Click here to write to your local candidates, asking them to support our manifesto
  2. You can Tweet the manifesto to spread the word about our demands – use the hashtag #HIVmanifesto. You can also take a photo of yourself holding our HIV pledge board.
  3. Take it offline: meet with your candidates face-to-face to discuss the points in the manifesto. Go to any local hustings events to do the same. Ask questions to see how committed they are to the HIV manifesto. Take a look at this toolkit with details and tips on what questions to ask.

Don’t forget to let us know how your local candidates responded. Email HIVactivist.org.uk@nat.org.uk


Alex’s Story

Friday, April 21st, 2017

Alex

 

Friday 17th April 2015.

HIV result: positive.

The three letters that turned my world upside down and changed life as I knew it forever; a day that will forever be etched in to my memory.

 

As a teacher, it was the last day of the Easter holidays before the start of a new term. I met up with another friend of mine to walk his dog. My phone rang and I was surprised to hear that I had been called by the sexual health clinic following a routine sexual health check-up earlier in the week. The person on the end of the phone asked me if I could go to the clinic immediately.

An hour later I arrived at the clinic. My anxiety flared and I focused on controlling my breathing. The time seemed to drag and the resounding ticking of the clock heightened the tension. I was called in by a sexual health advisor, who sat me down.

I sat there in shock as the news slapped me across the face: HIV positive. She asked me whether I was surprised by this result. I couldn’t talk and just nodded. I broke down and slumped into the chair unable to breathe. I excused myself to go to the toilet to vomit. In the privacy of the toilet I fell to the floor, sobbing and shaking uncontrollably. After a few minutes, I regained some composure and returned to the small consultation room. In my ignorance, I was convinced that my life would be over and I was sure to die. I felt the foundations of my life shift as I thought about not finding love, being undesirable and being unable to have children.

 

When I think back to the initial days and weeks following my diagnosis, I am filled with profound sadness and a desire to reach out and wrap my arms around my very vulnerable self. I was swamped with a myriad of feelings: grief, self-disgust, anger, sadness and a new found awareness of my vulnerability and mortality. I had to grieve for what I had lost and the potential stigma and obstacles that I had gained.

Two days later and in a dazed state, I travelled home to tell my mum. She was immediately concerned when I turned up at the front door and burst into tears. Her support and understanding immediately alleviated some of the weight. I am so fortunate to be surrounded by the support and unconditional love of my family. Along with this is my family’s wonderfully twisted sense of humour. If someone in my house is having a bad day they are told: “Stop being so HIV negative!”

 

I began to see what support was available and I received support through online forums, counselling and attending a newly diagnosed HIV course. The culmination of these experiences equipped me with the knowledge and skills to live a full life with HIV. I felt empowered. So empowered in fact that I made a video entitled: “My HIV Diagnosis: Coming Out Again” which went viral (excuse the pun) on Facebook. I was inundated with words of kindness and support. I stand firmly behind my decision to do this as it brought down the walls and enabled me to normalise my HIV rather than keeping it as my dark secret.

Being diagnosed with HIV has enriched my life in so many ways. For me, it made me evaluate my priorities. Soon after being diagnosed, I quit my job, moved cities and started a Master’s degree. I also took up running. Running has become a positive outlet and helped me to develop a strong body and a strong mind. In 2016 I ran a half marathon in under two hours raising £675 for a children’s HIV charity.

Reflecting upon what I have achieved in just under two years of living with HIV fills me with a sense of pride and a zest for life. I know now that I can look forward to many more years of living positively with HIV provided that I take my medication and live a healthy and balanced lifestyle.

 

I look forward to the future and I embrace the challenges that come my way. I have battled with my self-esteem and sense of worth but this heals with time and the right support. Despite obstacles, bumps in the road, pain and suffering, to be alive and living with HIV in 2017 is a comma, rather than the full stop that it would have been just two decades ago. For all those lives lost, I see it as my duty to thrive; not just survive. For this reason, I am passionate about being a “positive” ambassador and HIV activist.

I have recently completed the Project 100 Peer Mentor training with Positively UK to support newly diagnosed people at the start of their journey. I cannot recommend this highly enough, for people living with HIV to take forward their personal experiences, insight and wealth of knowledge.

Now there are days when I do not even think about HIV at all. It has become a small, manageable, part of my life. I still face the challenge of stigma, rejection and discrimination but I have developed a thick skin, resilience and strategies to live a life filled with love and laughter.

 

Next step… finding a husband!


Let’s Talk Babies!

Monday, April 10th, 2017

Let's Talk Babies

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.