Women living with HIV

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.

Romance Starts at Home

Tuesday, February 14th, 2017

#lovepositivewomen

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:

  • To put ourselves first
  • To compromise
  • Don’t sell ourselves short
  • Not listen to what society says a woman should do/ should be
  • We need to know what we want
  • ‘All along I was enough for myself’
  • We can’t change our partners
  • Don’t try and please our partner; please ourselves
  • We need to look at ourselves first and the role we play in relationships
  • We need to be more independent
  • We need to develop our self confidence
  • We need to look at other opportunities outside the relationship
  • We need to have lives filled with different interests

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:

  • Stay with a positive attitude: it is contagious
  • Normalise HIV, don’t make a big deal of it
  • Check how you feel about it yourself, people pick up on your emotions
  • Don’ treat it like a problem
  • Give the facts
  • Gauge their knowledge first with casual questions
  • Make sure the person you are dealing with has empathy
  • Make sure they deserve to know and they are a nice person all round

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

HIV and the Menopause

Thursday, November 17th, 2016

Shema Tariq

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 s.tariq@ucl.ac.uk

Where can we find out more?

If this has sparked your interest, then you can find out more about PRIME at our website and by following us on Twitter at @Prime_UCL.

For more information about the menopause then please check out these websites: