Monday, July 24th, 2017
We extremely excited to announce that our women’s project, ‘Positively Women’, will be holding a Between The Sheets event on Saturday 30 September.
This will be a day event exploring issues around: pleasure, sex, relationships, intimacy, and self-love for women living with HIV.
The day will include:
When: Saturday 30 September from 10:30 to 5pm
Where: Positively UK, 345 City Road, London EC1V 1LR
Between the Sheets events were started in 2012 by Sahir House in collaboration with Community Health in Liverpool, to offer women living with HIV a safe space to explore issues around sexuality, intimacy and pleasure. Positively UK is proud to carry on this legacy!
Monday, July 17th, 2017
Having a baby can be an exciting time, but also one filled with apprehension. Every pregnancy can be different and with all the pressure put onto expectant mothers and new mums it can be very overwhelming. When you add HIV to the mix it can definitely become a time of deep anxiety.
The first thing to do would be to look after yourself in pregnancy. Listen to the advice given by your Midwife but if you are not in agreement and you are unsure about something always ask for a second opinion, and make sure that your questions and doubts are addressed. This is your pregnancy journey and it’s unique to you.
Nowadays being positive isn’t a problem when you become pregnant. Most women worry about issues such as: will my baby be positive? and will the medication affect my unborn baby? Well I can tell you that from my own experience there have been no ill effects on my children’s health. I have had three children since becoming positive back in 1997.
During pregnancy it is crucial to be on HIV medication. The aim is to have an undetectable viral load when you give birth, so the virus cannot be transmitted to the child. Undetectable means untransmittable: and this is true not only during pregnancy, but also for sex when you are trying to get pregnant!
It’s a good process to be able to talk to other positive mothers who have been through a pregnancy and come out the other side. This can help put the mothers mind at rest and give them a more relaxed outlook. If you like the idea of speaking to someone else who has had a baby while having HIV, you could get in touch with us at Positively UK and we could match you with a Mentor Mother, who will support you throughout your pregnancy.
All new mothers experience feelings of doubt. Especially if it’s your first child. Don’t be afraid to ask for help and advice. Babies just need cuddles, love, contact, food, sleep, clean clothes, clean nappies and to hear a comforting voice. Babies bond just as well through bottle feeding as they do through breastfeeding, it’s all about contact, cuddles and caring with mummy’s voice.
HIV pregnancy guidelines in the UK still recommend that mothers with HIV should bottle feed, if possible. Breastfeeding when having HIV, even if you are taking medication and your viral load is undetectable, still carries a very small chance of passing the virus to the baby. If you feel very strongly about wanting to breastfeed, please make sure you talk about it with your healthcare team, as it is important that you and the baby get closely monitored to minimise all the risks.
Once the baby is born you will be spending a lot of time with them. But you must remember that, when a baby is tiny, sleeping with them in the same bed can be dangerous. You can roll and suffocate the baby. It is always best to put your baby in their cot. Room temperature should not be too hot or too cold. Babies like comfortable clothes; you don’t need expensive designer outfits when they are tiny. It’s a waste of money. Just have enough changes of clothing for when baby is sick or their nappy leaks. Trust me nappies often leak.
Once you have had your baby always remember that the community midwife may not be aware of your HIV status. Only let people know information that you are comfortable with. If you don’t want to discuss your HIV status with a community midwife that is your choice. Be firm and don’t feel pressured into any situation.
Sleep is a big factor with a new baby. Sleepless nights are one of the things that you will experience with a new baby. So make sure when you get a chance to take a nap DO IT. If somebody can come along and watch the baby for a few hours whilst you have a lie down this really helps. Babies soon get into a pattern of sleeping more so don’t worry this stage doesn’t last forever.
Just make sure you enjoy every moment as children grow up so fast. Before you know it they are grown up and you will not believe where all that time went!
Let’s Talk Babies — Positively UK’s bi-monthly group for new mothers living with HIV will have an outing to Kensington Gardens on Friday 21 July. If you and your baby or toddler would like to join our group please email firstname.lastname@example.org or call Diana or Helen on 020 7713 0444.
If you are planning to have a baby or are already pregnant and would like a mentor mother to support you in your unique pregnancy journey please email email@example.com or firstname.lastname@example.org or call us on 020 7713 0444.
Thursday, June 29th, 2017
This is an important new report from the Women’s Health & Equality Consortium (WHEC), of which Positively UK is a member, based on 9 years’ research on women’s experiences of mental health and seeking help. It highlights the importance of women only spaces, and specialised services, such as our Women’s Project in improving the mental health of women especially those who experience several layers of exclusion: such as women who live in poverty, BME women, and women living with HIV.
Monday, June 19th, 2017
There is no feeling tougher than the feeling of being alone, of being the only one. Be that feeling that you are the only one struggling after the breakup of a relationship, or the only one struggling to pay bills, or leave the house because of the ever present fear of discrimination or bullying – be that in the street or in the workplace.
Feeling alone is devastating, it often leads to a deeper depression and feelings of isolation.
Why me, am I the only one?
For much of my younger life living as a woman who happens to be transgender and HIV positive, these were questions I asked myself on a daily basis. I felt that maybe if I were just trans or just HIV positive then perhaps I could find a spiritual or nourishing home, perhaps a support group, or somewhere I could share my concerns and fears. But there were no support groups for trans women living with HIV, I wanted to share my feelings but also laugh and build friendships and a support network.
I have been positive for almost a quarter of a century, almost half of my life and for a great deal of that time I felt alone, very alone. I would go to support groups but always felt on the outside, people didn’t understand my ‘being trans’ or people didn’t understand my being ‘HIV positive’. Sometimes people would say to me,
“This is a space to talk about being HIV not being trans so please don’t confuse matters”
“This is a trans group to discuss trans politics and campaigning, you’re the only one here who is HIV positive and it takes up too much precious time just for you.”
There is a much longer list of things that people have said to me over the years but that is far too toxic to give life to here, suffice to say that it often felt spiteful and cruel, it usually reinforced my being alone and it made me feel outside of all my potential communities unless I kept parts of me quiet or secret. I couldn’t find support through the trans community or through the HIV support networks. I was often told that I was the only one attending that particular clinic, I truly believed I was alone.
I learned not to talk about my HIV status, I accepted that I would make weekly, then monthly and now yearly trips to see my HIV consultant but outside of these trips my HIV would not exist. I stopped trying to make contact with other trans people who may be HIV positive and stopped attending women’s support groups. Back then, even ten years ago there was still some hostility towards a trans woman being present in a women only group, my womanhood frequently questioned and my authenticity became the focus of my being there, not my HIV status, or its stigma, or my rejection and my complete lack of intimacy with another. For over eighteen years of my HIV positive reality I didn’t speak to a single trans woman who was also HIV positive.
When we look at global statistics we know that there are many others out there like me but somehow for most of those years we were prevented from connecting. The rampant transphobia within society meant that people, both trans and cis, would feel that being trans was tough enough without anymore added pressures, such as being HIV positive, so people kept it secret and other people who weren’t HIV positive didn’t want to address it or speak about it. Sometimes I was asked to speak about being trans but not about being HIV positive. Far too often in HIV clinics, conferences, spaces I would be faced by ignorance and told that no one had met a trans person before so they couldn’t give any advice about hormones, safe sex or support networks. Sometimes clinicians advised me to set up my own group, odd when back then I needed support and not a network to build.
Over the last few years that has started to change, slowly but surely. Groups like Gendered Intelligence, Mermaids and cliniQ to name a few have fought brilliantly for space; often starting out as voluntary groups they now provide far safer and informed spaces in which trans people can meet, talk and socialise. But still there is a gap, a space where HIV positive trans women can meet up, have fun, talk about their lives and generally support each other through friendship, solidarity and peer support.
A new initiative set up by cliniQ and Positively UK called ‘Positively Trans‘ is having its launch on the 15th July at 345 City Road, London EC1V 1LR. It is set to be a day where trans women living with HIV can meet, chat and have a few hours of pampering, yoga and brunch. A chance to share experiences or just enjoy being with other women who understand, a chance to make new friends and hear their stories and experiences.
‘Positively Trans‘ will run from 11am until 4pm and will be facilitated by trans and cis women who are either HIV positive or who work in and around HIV and sexual healthcare, such as Michelle Ross the cofounder of cliniQ.
This is a wonderful initiative and opportunity to meet other women living with HIV and to have a few hours away from the stresses and strains of the world, perhaps the difficulties of transitioning or the toughness of dealing with the stigma we as trans HIV positive women face.
I still face that, not every day or every week perhaps, but still I’m often written out of debates, or reduced just to being a set of risks, or worse as a victim. I’m often politely stigmatised and often still feel alone. I am really looking forward to meeting with the women who attend and I ask any trans woman out there who is living with HIV to try and attend, lets come together and share out the weight of the issues we have to face and live with, in a nourishing space where we can laugh, talk and build bonds.
Wednesday, June 7th, 2017
Susan Cole is an activist and feminist mother of four. She is the Community Engagement Officer for NAT (National AIDS Trust) and is on the steering committee of Positively UK’s Women’s Project.
Women’s rights are human rights. Unless of course, you don’t think women are human. Increasingly, as we’re bombarded by commonplace casual misogyny, I’m feeling there are some who don’t regard us as quite human. We hear a world leader talk about grabbing women “by the pussy” and watch as women’s reproductive rights are eroded internationally. Women living with HIV seem to be particularly vulnerable to having their rights abused. Let’s end this now.
1 in 4 women will experience domestic abuse in their lifetime in the UK. This shocking statistic is even higher amongst women living with HIV. A study at Homerton Hospital found that 52% of women with HIV had experienced intimate partner violence. HIV stigma and self-stigma compound this. The threat of HIV status disclosure can have a devastating impact on feeling sufficiently empowered to leave an abusive relationship. Pervasive psychological abuse can strip away self-confidence, leaving women even more vulnerable.
I hear gut wrenching stories of women living with HIV having their rights violated, in a variety of ways. Spurious threats of criminal investigation for HIV transmission. HIV statuses being dragged through the Family Court. Discrimination in the workplace and in health care settings. These outrageous violations of the rights of women living with HIV, often fuelled by sexism, must be challenged.
One way to fight back is to know your rights and feel sufficiently empowered to demand them. You’re protected by law from HIV discrimination in a variety of settings, including the workplace and in healthcare. Abuse motivated by your HIV status is a hate crime. Your HIV status should not be relevant in family cases. You have the right to HIV treatment in the UK regardless of your immigration status. And it’s important to know that domestic abuse does not just mean physical violence, but also psychological abuse and coercive control: all are illegal.
At Positively UK’s Women’s workshop: Our Rights on 24 June, women living with HIV are coming together to increase their awareness of their rights. It will provide an empowering opportunity to increase assertiveness and ability to advocate, as well as share stories and ways of overcoming difficulties with other inspirational women. It’s open to all women living with HIV.
In the words of Angela Davis “I’m no longer accepting the things I cannot change. I’m changing the things I cannot accept”. Let’s work together to end the abuse of rights of women with HIV.
The Women’s Room ‘Our Rights’ workshop will be Saturday 24 June from 11am to 5pm
at Positively UK, 345 City Road, London EC1V 1LR,
please email us if you would like to speak to another woman living with HIV or come to one of our groups:
email@example.com or firstname.lastname@example.org.
Tuesday, May 23rd, 2017
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?
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.
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.
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.
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.
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.
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.
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 email@example.com
Monday, May 22nd, 2017
[Content Note: This blog post contains discussions around domestic violence]
Ms A.L.L. is one of the regular participants to our monthly group The Women’s Room. In this blog post, she shares some words of advice on how to deal with domestic violence and the terrible effects it has on our health and self-esteem.
As women with HIV it a is well known fact that we are at higher risk of mental ill health including depression anxiety and low self–esteem, than the general population.
In 2013 Positively UK surveyed people living with HIV around mental health and 70% of the women who responded said that they had struggled with poor mental health, and that this had often lead to missing doses of their HIV medications, or not taking good care of their health in general.
Sadly women with HIV still face instability, stigma and discrimination, and high levels of poverty and gender based violence women and often immigration problems. All of this can lead to emotional problems, to say the least.
It is well known that abuse within a relationship manifests in different ways, and it is often the main factor of depression, anxiety and other mental disorders. It can lead to insomnia, self-harm, suicide, eating disorders and misuse of alcohol and drugs.
If you’re diagnosed with HIV your partner can use this to abuse you even more. For example, by:
If you have been diagnosed with HIV, you could be extremely vulnerable, and less likely to report it to the police.
You might feel a sense of shame because of the stigma attached by society and powerless.
Moreover, some service providers are likely to be more problematic, due to stigma (see also the report by Women’s Health Equality consortium from 2014 I am More Than One Thing):
Do not blame yourself your mental health difficulties, or the abuse you are facing are not your fault, and you are not responsible for the abuse: the abuser is.
You are entitled to help, so seek it as soon as possible, it’s your right to live a happy and fulfilled life.
Many women living with HIV have found useful talk to others in the same situation and accessing peer support groups. Our next group The Women’s Room will be on the theme of building up our Self Esteem, which is always an important step in improving our emotional wellbeing and seeking help if we are facing an abusive relationship.
The Women’s Room ‘Growing our Self Esteem’ workshop will be Wednesday 14 June from 5pm to 8pm at Positively UK, 345 City Road, London EC1V 1LR, please email us if you would like to speak to another woman living with HIV or come to one of our groups: firstname.lastname@example.org or email@example.com.
Tuesday, May 16th, 2017
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:
*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.
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.
Don’t forget to let us know how your local candidates responded. Email HIVactivist.firstname.lastname@example.org
Friday, April 21st, 2017
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!
Monday, April 10th, 2017
I am trying to remember what it was like with me bringing up my two sons, one now a teenager of 15 and the other an ‘adult’ of 18! It all seems a blur really but all I know that looking back it seems long ago until I look at their baby and toddler pictures and wish they were that age again. Some of you may empathise with my feelings others will be thinking I am mad to think that because your reality right now is very different.
Let me try and guess what is going on – lack of sleep, exhaustion, seemingly endless chores of feeding, changing diapers, laundry, milk feeds or real meals, drama around bedtimes, sudden temperatures or other illnesses or falls that send you helter skelter to your nearest A&E, and on and on it goes. And then you meet someone like me who has perhaps seen a lot of it and they say ‘oh the joys of motherhood!’ and you are like ‘Joys?’ ‘What’s that got to do with it?’
Let me paint another scene; day time with children’s TV (it was the tweenies in my time) that signalled that your toddler was awake and had switched on the telly themselves. That’s a milestone! There plenty of others from when they first hold their up, sit up, pull themselves up to stand and cruising along furniture, walk, eat solids, speak something intelligible, ask for things, delight at seeing your face if you have been away. There’s a lot that goes with recognising and celebrating these achievements.
The ages between 0-5 are by far the best in my opinion in parenting. That is the window period any of us have to make a mark on their development. They do grow and develop regardless but your influence and input at this age will have a lifetime impact. The variety, quality and quantity of experiences you give them, the quality of nurturing and nature of your relationship with them and the time you invest in these things, will all work together to bring them up into a well-functioning adult. Primary school helps during the childhood years 6-12 but remember it all starts in the home and with you ‘Mum’ whether Dad is in the picture or not. There are the teenage years (a topic for another day) but if you do not do the hard work now, then you will have challenges then.
There is a lot that I was able to do just because I could. I was an immigrant, was not allowed to work, lived on a very limited budget but had loads of time on my hands. What I discovered was that there was plenty that I could do and tap into without needing to spend too much. Mother and Toddler groups, libraries, parks, museums were all places I frequented every week. We did not live in huge houses with loads of space; it ranged from one room, then two rooms before we graduated to a whole flat in a period of 8 years. Their needs are very different and when they were under 5 I meant the world to them. I was the one who knew every answer to every question and could come up with all sorts of magical experiences.
Children that age love to play, enjoy special time with their parents and grow and develop with new and interesting experiences and environments beyond the four walls of any room in their home. That is what Mum and Toddler groups are about. So come, Let’s Talk Babies! In a safe environment, meet other mothers with children the same age, with loads of experiences in the room to share and to learn from. The children will get involved in messy play, make friends, experiment with independence, sing at circle time and learn to share toys. Make a note in your diary for you and your little one to come to one of our sessions here are Positively UK. The next one is on 25th May 2017 starting at 10.00am prompt so we can finish in good time for those who have do the school run as well.
Monday, April 3rd, 2017
I’ve been on my HIV treatment for a while and have become quite settled with the meds I am taking. Last week I was asked by my doctor to switch to cheaper HIV meds that she said are just as effective but will save the NHS money.
Will the treatment be as good and do I have to make the change?
This is a question that most people taking HIV meds should be getting their heads around as the NHS is bringing in new prescribing guidance on HIV medication options. For those whose doctor hasn’t yet discussed this with them, they probably soon will, so being prepared for the conversation is a good idea and that you understand what is happening and why.
When a drug company makes a new medicine, it is controlled under a patent. It has an approved, or generic, name as well as its own brand name chosen by the company. For example when you need pain relief you might buy Boots own Ibuprofen (that is the generic name) rather than the more expensive Nurofen (this is the brand name). They are basically the same drug, but once the patent runs out, other drug companies can make the drug at a lower cost. These are called ‘generic drugs’. More than 70% of all medications prescribed by the NHS are generic and it is routine for the NHS to use generic drugs wherever possible to treat any health condition.
HIV treatment is usually a combination of three or more different drugs – called a ‘regimen’ – and comes in the form of a small number of pills that you take each day or a single combined pill known as a Single Tablet Regimen (STR). Doctors have access to a range of HIV meds that they can prescribe. The costs of these drug regimens vary significantly, however they all work equally well in managing your HIV. The best regimen for you will be based on your test results, any other health conditions or other medications you may be taking. Your doctor will also consider other factors, your occupation for example, that may affect the choice of which is the best regimen for you.
Generic HIV medications are already in use, but as more HIV drugs become generic and more patients switch to them, the potential annual savings for the NHS run into millions of pounds. This is why you may be asked to change from a branded product to a generic one. If you are on a Single Tablet Regimen, this might mean increasing the number of tablets you take. The appearance of the packaging or the tablets may also change, but their quality and effectiveness will be unaffected.
I know that drug names can be hard to pronounce, let alone remember, so stick with me here. Let’s take an example. Atripla is a single tablet branded HIV med containing three different drugs. The NHS are switching people from Atripla (3 drugs) to Truvada (2 drugs) and generic efavirenz (1 drug). The two options contain identical drugs but are in either one pill (Atripla) or two pills (Truvada and efavirenz). The two pills are about £700 a year cheaper. This is just one example and there are lots of HIV drug combinations, so the chances are that your regimen may well contain a generic alternative.
Any changes proposed to your medication should be discussed with you by your doctor and you shouldn’t suddenly start getting a different medication without knowing about it in advance. You might also want to ask whether you can make the switch to generic alternatives. Knowing that you are doing all you can to keep the prices of your meds as low as possible helps you do your bit by freeing up resources to meet other people’s needs across the NHS. Switching from one to two pills a day (which is what I plan to do) doesn’t seem like much of an inconvenience if it’s going to help the NHS. Another money-saver is home or local (e.g pharmacy, work or post office) delivery of HIV meds, which saves the NHS the 20% VAT, so you might want to consider that if you don’t already use it. To find out more, see this article from aidsmap.
It’s important to remember however, that if there’s a good reason why you should stay on your current regimen, then your doctor shouldn’t force you to make the change and you shouldn’t feel bad about doing so. Your safety and your needs should always come first. Keeping an open and honest dialogue with your doctor and HIV team is really important here, whether this is your first time on meds or you are thinking to make a switch. Make sure you talk to them about the following if they are relevant:
Your mental Health: An HIV diagnosis can trigger mental health issues and some HIV drugs can make mental health worse. How you are feeling now and in the past can help your doctor decide what medication option is best for you. If you suffer from mood swings, anxiety or depression, tell your HIV team.
Shift work or irregular hours: These may affect your treatment options – some drugs can make you feel dizzy, some you have to have with a meal.
Other medication and health conditions: Your doctor should ask what other medications and herbals or supplements you are taking. Think about anti-depressants, pain management, statins, hormone treatments etc., including non-oral medicines such as inhalers.
Recreational drugs: tell your doctor if you are taking any recreational drugs as these can also interact with HIV meds.
Sharing health information: Your healthcare will be easier and safer to manage if your GP knows your HIV status. Your GP is best placed to manage non-HIV related conditions or make referrals to other specialists as well as ensuring you are part of any national programmes such as flu vaccination or cancer screening. They need to know all the medicines you take (including HIV meds) to safely prescribe any drugs. Your clinic will check you are happy for them to write to your GP – you should tell them if you are not.
If you need any further advice or support around this, talk to the HIV team in your clinic. HIV i-base is also a good source of treatment information who you can call or email with questions, as is aidsmap. At Positively UK we provide one to one and group peer support for and by people living with HIV and we regularly discuss our experiences and questions around treatment. MyHIV offer online counselling and advice, live chat and an online community forum, should you want to check in with others about their experiences.
If you’ve got a question you’d like answered around living with HIV, please email email@example.com
Tuesday, February 14th, 2017
This month at the Women’s Room, our monthly support group for women with HIV, we celebrated Valentine’s Day and gathered together to talk about love in all its aspects from self-love to dating, learning from past relationships and talking about HIV to partners. We were inspired by the campaign started by the International Community of Women Living with HIV (ICW) in 2015 ‘Love a Positive Woman: Romance Starts at Home’.
We know that many of us are interested in dating, by a show of hands on the evening, in our group of just over 20 women a third were in a relationship, a third were looking for a partner, and a third were not interested in dating. However, we all agreed we were all interested in the topic… as you never know! Unsurprisingly many of us had responded to the HIV diagnosis with strong anxiety around relationships. As one of the participants who had only been diagnosed for about a year put it: “HIV has made me reconsider my approach to dating, and I have decided to take a pause. HIV has given me an opportunity to reflect as I need to understand better where I stand and what I want.” Those words resonated with many of us. Following our diagnosis in many we have asked ourselves: “Will I ever have sex again?” “Will I be able to love?” “How can I have a relationship with HIV?”
Having been a self-help group facilitator of women with HIV for over 15 years, I feel like I am a bit of an expert, as I have spoken to hundreds of women with HIV about relationships, and I can tell you that actually many of us will go on having relationships, having sex, starting families etc. Actually often the experience of having to deal with HIV, will give us additional skills and insights to navigate relationships.
In 2017 we finally know that science has demonstrated that when we take HIV treatment and our virus is undetectable (which means there is so little HIV in the blood it can hardly be found) we cannot pass HIV through sex. The PARTNER study, which followed couples where one partner was HIV positive and one was HIV negative for over 4 years and included men and women, straight and gay couples, and counted over 58,0000 instances of penetrative sex without a condom, didn’t encounter one single transmission… I just love this statistic nearly 60,0000 condomless sexual acts with no HIV being passed… that’s a lovely thought for Valentine’s day… anyway I am digressing…
The important thing is the that PARTNER study, after all this sero-different jolly sex without condoms, showed ZERO transmissions! Alison Rodgers, one of the researchers presenting the study when asked to tell Aidsmap about the chances of someone with an undetectable viral load transmitting HIV, said “our best estimate is zero”.
As women living with HIV the evidence brought by the PARTNER study is incredibly powerful and liberating. However, the reality is that these findings are not common knowledge and the prospects of having to explain substantial scientific information to a potential partner can still be daunting to many of us. We still wish that more was done in the public domain to dispel common myths around HIV.
In the final part of the evening we a returned to the theme of self-love. In small groups we discussed all the beautiful qualities we recognise in ourselves, we named our natural gifts, and acknowledged the many positive aspects we manifest as acts of self-love. It was so heart-warming to go around the room and hear women say “I am good at making you laugh” “I am spiritual person” “I go to church” “I can teach you how to cook” “I like to listen” “I am passionate” “I like to have fun and dance until dawn” “I have a great smile.”
We also created a ‘Partner Manifesto’ making a wish list of characteristics we were hoping for in a partner. Some of the most important ones we named were being compassionate, kind, open minded, a problem solver, financially independent, and obviously somebody with a nice bum with whom we felt attraction and chemistry!
Finally, we also discussed what we learnt from our past relationships:
I must admit I was completely smitten by the evening. In so many years facilitating groups about love and relationships this was the first time when the conversation didn’t focus totally on HIV. All of a sudden we collectively realised that actually the most important matter when looking for a relationship shouldn’t just be weather our partners accepts the fact that we have HIV, but whether or not they are the right person for us. Just like before we knew we had HIV. Maybe the only difference is that we are a bit wiser.
As 8 o’clock was approaching, we quickly shared our best bits of wisdom on the topic of telling a partner that we have HIV.
The Dos of telling were:
As for the don’ts of telling partners, we didn’t have too many: just don’t rush. Do it when is right for you, for some of us that may be on the first date, and for others we may need more time. We must remember that there is no obligation to tell, if we are not ready, especially, now, as we know that when we are undetectable we will not pass HIV: it is up to us, when, to whom, and how we talk about our HIV.
Our next Women’s Room meeting will be on 08 March, on International Women’s Day. The theme will be: ‘Fulfilling Our Potential’ and we will look at opportunities to for self-development, training, volunteering, and developing our careers. For more information, please ring 020 7713 0444 or email Hrogers@positivelyuk.org or Donyanago@positivelyuk.org
Wednesday, February 1st, 2017
Since I started treatment and got to undetectable I’ve felt a lot better about meeting guys and having sex again. But because I know I’m not infectious, I’m not sure whether I need to tell them about my HIV.
What do you think?
Great to hear you’re feeling back to your old self. When we become undetectable and realise we can’t transmit the virus to anyone, we start to get our ‘mojo’ back and that does wonders for our confidence and self-worth. Meeting and dating guys can be difficult at the best of times, regardless of our HIV status, so removing this one complication makes things a whole lot easier.
But like so many things in life, there’s always a flip side. Living with an undetectable viral load places us in an odd position. On the one hand we should stay perfectly healthy if we take our meds, but on the other we’re not actually cured. We’re still HIV positive men. A friend who was diagnosed many years back recently told me that in the old days you would disclose your status to a guy you liked because you wanted to give him a simple choice. A choice as to whether to sleep with you or not. Because in those days there WAS a risk of passing on the virus. If he didn’t want to get involved with you or do the business then you wouldn’t like it, but at least you tried to respect it. Nowadays it’s different. It shouldn’t really be about giving someone a choice based on your status, it’s more about you wanting to open a dialogue, to have the conversation about what it means to have a healthy sex life and relationship. Of course they may not want to sleep with you for other reasons, but if it’s because of your HIV when there is no risk of passing on the virus then it makes it harder, in my view, to respect them.
Having the conversation though, starts by having it with yourself. We all need to think through whether we will tell someone, when and how we do it and how prepared we might be for the reaction. If it’s just a hook up or a one-night stand, I don’t think there’s necessarily the need to disclose because you’re not exposing him to any HIV risk and having ‘that’ conversation can be a bit of a passion killer. But if he then later asks you, you need to be clear what you’re going to say because it’s hard to predict how someone might react if you disclose to them only after you’ve had sex. Personally, I almost always disclose because I prefer to lay my cards on the table and for both of us to go into things with our eyes open. This way we both feel more relaxed and there’s better connection and chemistry.
If we do disclose, say in a dating situation, a common question I get asked is when best to do it. Do we break the news when we meet someone and get it out the way so as not to waste time barking up the wrong tree? Or do we wait until they’ve got to know (and hopefully like us) a bit better and then be more likely to overlook the issue of our HIV? Of course the risk of waiting is that we may then be open to accusations of not having told them earlier. Personally, I think we do ourselves down if we wait too long before we say anything. Think about it. What are we telling ourselves if we start from a position where we feel we are ‘damaged goods’ and that perhaps they’ll ‘overlook’ our status once they’ve got to know us? Isn’t it better to go on a date feeling sexy and confident? After all, we’re doing our bit. We’re on treatment, we’re undetectable, we’re looking after our health. We should be proud of that!
Of course he may react badly, or show high levels of ignorance. If this is the case, start off with trying NOT to be defensive. Use it as an opportunity to educate him. Ask him when he was last tested and whether he’s thought about taking PrEP. Find out about PrEP yourself so you can give him the right information (visit I Want PrEP Now and Prepster). If he needs time to think things over, make sure he knows you’re cool with that. More than likely he’ll like and respect you more for this. And if he doesn’t then he’s probably not worth it anyway.
Then of course there’s the Apps. To their credit, many of them now have options around choosing what you say about your status. Not just whether you’re positive or negative, but also whether you’re undetectable or on PrEP. Being upfront about this before anyone even messages you can avoid awkward conversations down the line. This way you can filter out people who might have an issue with your status before they even contact you. Being honest may also lead to more interest from other positive guys and also from other guys that know if you’re undetectable, they can’t catch HIV from you. In short if you’re being honest about your status on line, chances are people won’t think any less of you. I’ve noticed more guys being upfront about their status which is a really good thing, whether we’re poz or neg. Telling the world we’re undetectable or on PrEP isn’t something everyone wants to do, but every one of us that does it makes an important contribution to bringing our lives with HIV and preventing onward transmission into the light and reducing stigma around it.
We don’t have to, or generally always want to, tell the world about our HIV but when we do we’re acknowledging that it’s an important part of our personal story about which we shouldn’t feel any guilt or shame. It’s just one of life’s challenges that are thrown at us, I believe, to make us better and stronger people. But this only happens if we learn to open up, talk about it, and have those better conversations.
If you’ve got a question you’d like answered around living with HIV, please email firstname.lastname@example.org
Wednesday, December 14th, 2016
Since my diagnosis in the summer, I’ve told one or two close friends but am finding it hard to be more open about my status and haven’t told my family yet. I’m going home to see them at Christmas and would like them to know but am worried how they’ll react.
What shall I do?
You’re far from alone. Telling our friends and family about our HIV status is one of the biggest challenges we face as people living with HIV and having feelings of uncertainty around it is very common. Deciding who to tell, when and how to do it can feel so overwhelming, especially after a new diagnosis, that some of us opt to stay in the viral closet for fear of negative reaction, judgement and rejection. For us gay men, we remember only too well how that feels from our experiences coming out as gay and how we approach disclosing out HIV status is closely informed by those times. In many ways it’s a second coming out.
Here are my 5 most important things to consider when disclosing to family and friends:
It’s your choice who you tell, and yours alone
The first thing to remember is that choosing who to tell and not tell is your personal decision. You don’t have to tell anybody, or feel any pressure to do so – it’s your choice and your right. Living with HIV is in many ways no different from living with any chronic medical condition and is a private matter. So when you do decide to open up, it’s better to be selective and take your time to consider who to tell and how to tell them. You want to get it right, because once you’ve told people you can’t take it back.
Once you’ve decided to tell, be clear why you are doing the telling
Usually, we’ll be telling family and friends because something important has happened to us and we want to share important things with those we are closest to. But we should check in with ourselves whether we’re feeling anxious and are just doing it to ‘dump’ our feelings. Often being able to talk about what’s on our mind is a great relief and that is enough in itself, but if you’re not sure you’ll get the support or understanding, or that they won’t be able to handle it, then think carefully. A good rule of thumb is to ask yourself the question, what is the benefit to me of telling them? If that’s not clear, don’t do it.
Think about what you want to say
Once you’ve decided to disclose, it’s good to think about what you want to say in advance and be ready for the questions. You might want to say that you’re telling them because of how much they mean to you and how much you love them. And that you want them to be there for you. Think about what it is you want to tell them about your HIV. Keep it simple if you can – you don’t have to tell your life story. You’ll probably want them to know that they don’t need to worry about your health, and that you’re going to be OK. And whether you’re on meds or not. Or undetectable. Offer to answer their questions but be prepared for the ‘how did you get it?’ one (errr… through sex?). Basically, the better informed you are, the more likely you are to re-assure them and reduce any anxiety they may have. If you’re anxious, they’ll probably be anxious too. In my experience, how you are and come across in these situations will determine more than anything else the reaction you get.
Be ready for the reaction
Having said that, we can never know for certain how people will react. So we need to be ready for this. Christmas may or may not be a good time to do it, depending on who is around and how long you’re all around for, so think about that. Whatever the response you get, and even if it doesn’t go the way you’d hoped, more than likely when that person has digested the news and thought about it, their reaction will change. I always find it useful to remember that my knowledge and understanding of HIV before I was diagnosed was, to my shame, not great so if I am faced with ignorance then I’ll be sympathetic, rather than defensive. The act of telling is not in my experience a one-off event, but rather a journey, a conversation, that takes time to unfold and develop. In fact, on receiving the news, it’s the other person that might want to get support and talk to someone else about it, so you need to consider whether you’re happy with them disclosing to other people or whether you’d prefer it kept in confidence.
And if all this just feels too difficult, don’t isolate yourself
There may be lots of reasons why you still don’t feel able to tell your nearest and dearest. Perhaps you’re not out, or there are cultural attitudes in your community that would simply make being open about your HIV status an unbearable prospect. If this is the case, then don’t isolate yourself. Allow yourself to draw on the support and experiences of others that have been in the same situation. A number of organisations, including Positively UK, provide one to one and group support giving you opportunities to explore your feelings and hear how others have dealt with these issues in a safe and confidential space.
For further guidance on telling people about your HIV try these websites:
I’ve been very lucky in that all the people I’ve told have been supportive and this has only strengthened my ties with family and friends. I come from a close family so it never even occurred to me not to tell them. But in terms of my friends, I made a conscious decision that if they couldn’t deal with it, then really they weren’t people I wanted in my life. People living with HIV that I know and work with often talk about their post diagnosis life as being like a ‘filter’, an opportunity to re-assess their relationships and focus on those that are genuine and nurturing. Time to get rid of the fake friends perhaps.
There’s no perfect roadmap to disclosing your status Cristian, but if you trust your instinct and not your fears, you’ll be on the right track. Thousands of others have dealt with this and have found their way through it. You will get through it too.
Thursday, December 8th, 2016
I was diagnosed a year ago, a few months after breaking up with my ex-partner. It has been all quite overwhelming and I felt I was not fit for dating or a relationship. My health and controlling the virus were my priority, together with keeping my job and my financial stability. The idea of dating was daunting and the prospect of intimacy scared me to the point that I have been disconnected from my sexuality since the diagnosis.
Today a year after I am in great health and I am confident that if I look after myself and take treatment regularly I will be able to have a normal life. However, my main worry remains whether I will be able to have a relationship again.
The Partner study has confirmed that being undetectable I cannot pass the virus. However not only it takes time for HIV positive people to fully embrace the meaning of being undetectable and regain confidence but once and if we achieve this we have to face a lack of public awareness and possible rejection. Many people still believe in wrong myths on how HIV is transmitted or don’t know the advance in treatment and probably only a few are aware that being undetectable today means being non-infectious.
Then there is the issue of confidentiality and stigma. I cannot think of starting a relationship hiding such an important part of my life to a potential partner. But then the dilemma is when is the right time to tell? Will he runaway before he gets to know me? Will he see me for who I am or will he only see HIV? And is he going to respect my privacy or is he going to tell my status to other people?
Reducing stigma and increasing public awareness. I often hear that HIV positive people have the responsibility to educate others on how it is living with HIV today. This is fine however we can do so only to a certain extent. Many including myself are worried of the consequences of being exposed to stigma and judgement and what the repercussions could be for our jobs, safety and families.
We are still living in the shadow of the terrifying AIDS campaign of the 80s which no longer reflects today’s medical progress. While HIV got somehow forgotten the epidemic hasn’t stopped. We need a new strong, loud and effective campaign which encourages testing by giving a more optimistic message on medical progress and emphasizes what being undetectable means in terms of preventing transmission.
Apart from health professionals and peer support groups I have only disclosed to a small and selected number of friends and they have been very supportive.
However there have been a couple of occasions at work when my boss made some very judgemental and ignorant comments on HIV and who gets it and worse “deserves” it because of what he considers being promiscuous people and behaviours.
I have worked for my company for many years and contributed to its growth. I have not taken a day off sick since my diagnosis, my performance hasn’t changed, I am taking treatments to protect myself and others surrounding me so it angers me that I have to feel threatened from a possible negative reaction should my boss find out my status. I consider this a form of psychological abuse.
For my peace of mind and pocket I have decided to live in secrecy for the time being, which is also quite daunting. I know I am protected by the law against discrimination however would I want to start a painful and expensive legal procedure should I feel I have been discriminated and most importantly would I want to work in an environment with these attitudes?
Again reducing stigma and improving public awareness.
When disclosing to different people as much as I found support I also felt many thought that they were not at risk of getting HIV as somehow they felt it only affects people from certain ethnic backgrounds, sexual orientations or those who have promiscuous behaviours.
I got HIV while I was in a relationship and I am an example that HIV can actually happen to anyone no matter if you fall in any of the categories or have behaviours considered at risk.
Especially with the rise of social media, dating websites and mobile applications anyone who is sexually active, whether promiscuous or not, is at risk. Again we need a strong campaign which tackles these wrong assumptions and breaks the fear of testing focusing instead on the impressive medical progress made since the epidemic started.
Wednesday, November 30th, 2016
I started HIV treatment a few months ago, and my viral load has just become undetectable. I know this is good news and that there is now virtually no risk of passing on the virus, but I still feel anxious about it and how it will affect my sex life and relationships.
Can you help?
It’s great news you’re now undetectable. This means that you have a level of virus in your blood that is so low it cannot be detected by the tests used in clinics. Not only does this mean that your body’s immune system is making a full recovery and you should live a long and healthy life, but that you’re no longer able to pass on HIV. That was a great feeling when it happened to me and knowing I was not infectious made me feel a whole lot better about myself.
But reaching the undetectable milestone, does raise new concerns and doubts in our minds. We know we’re not cured, but we know we’re basically OK so it feels like we’re in some kind of no man’s land of neither one thing or the other. And into this space pour the questions. Am I really uninfectious? Do I still need to use condoms? How do I talk about being positive and undetectable with my partners? Do I even need to disclose my new status? Suddenly things don’t feel quite so straightforward.
Let’s start with the facts. In terms of passing on HIV, the science has been building a pretty conclusive case. In 2008 it was claimed, through what has become known as the Swiss Statement, that if you’re on treatment and your viral load has been undetectable for at least 6 months then you don’t need to use condoms during sex. At the time, this caused a lot of controversy but more recent studies such as HPTN 052 and the PARTNER study are now backing this up as fact. The latter followed a group of straight and gay people living with HIV and on meds and their HIV negative partners as they had condomless sex to see whether treatment did prevent transmission. Out of 58,000 instances of sex without condoms, there was not a single case of HIV linked to their partner. Not one.
This was an important study because it included a large number of gay couples, showing that treatment prevents transmission via anal sex. This study is ongoing and further results are expected next year, but the take home message is if you have had an undetectable viral load for 6 months, and you have regular viral load testing showing that you remain undetectable, then the risk of passing on HIV to the other person without a condom is negligible. We can’t say zero risk, but that’s as close to zero as you can get. So whether you do or don’t use condoms, in the end comes down to the extent to which you and your partner worry about things that happen very rarely.
Before my diagnosis I’d been using condoms fairly religiously (although perhaps not religiously enough) but then after diagnosis and for the first time in my life, I realised I didn’t need to avoid getting HIV. This might sound obvious, but it was a much more significant moment than I imagined. The feeling of liberation I have discovered is shared by a lot of positive men. Finally, the fear is over and we can get on with the business of having sex the way it was meant to be, which after decades of living through the AIDS epidemic is something very powerful.
Unfortunately, condomless sex, particularly with multiple partners, leads to increased infection with other STI’s and the need for regular antibiotic treatments. This is unhealthy for us, costly for the NHS and if current predictions are anything to go by, the rise of antibiotic resistant strains of STI’s could mean that these infections become untreatable. STI’s such as Hepatitis C can also be more difficult to treat if we’re living with HIV. So we need to find ways of keeping ourselves and our partners healthy and STI free, while enjoying our sex lives. This comes down to asking ourselves what kind of sex and relationships we want.
Working out how to talk about our undetectable status can be tricky, particularly as there still appear to be high levels of fear and ignorance about it in the gay community. In a gay sex survey carried out last year by FS Magazine, it was found that 49% didn’t know what undetectable meant. It also showed that high numbers of men, particularly younger men, said they wouldn’t have sex with a positive guy. However, when it was explained to them what undetectable meant, a third of these men reconsidered their stance. This shows that although there remain high levels of ignorance, educating our friends and partners about undetectable viral loads goes a long way to combating stigma and rejection.
So, getting yourself informed about your undetectable status, and knowing the kind of sex and relationships you want, will give you the knowledge and confidence around whether to disclose to your partner, how you talk about it if you choose to do so and what you decide to tell him. It will also give him the confidence to know he can trust you. He may not take you at your word straight away and might want to go away and make up his own mind. That’s fine. At least you’ve got the ball rolling. In the end you’re both operating from a place of openness and honesty. Where things go from there depends on that magic thing called chemistry but at least you’ve got off on the right foot.
Check the hashtag #undetectable on twitter
For further reliable sources of information go to:
Thursday, November 17th, 2016
Please introduce yourself in a few words…
My name is Shema Tariq. I split my time between working as a consultant in HIV at Mortimer Market Centre (London) and as an HIV researcher at UCL. For the past ten years, I have worked on improving the health and wellbeing of women living with HIV. I currently lead the PRIME Study, a national study looking at menopause in women living with HIV.
What is the menopause?
The menopause (or the ‘change’) is the time when women’s periods stop permanently (either naturally or because of medical treatment) and they lose their reproductive potential. In the UK alone 13 million women are going through or have been through the menopause, many experiencing symptoms and possibly facing other longer term health impacts.
What can we expect as women living with HIV during the menopause?
The average age of the menopause in the UK is 51-52 years. As women approach this time they may notice their periods get more irregular or heavier. Women commonly notice sudden feelings of being hot (hot flushes). Other symptoms include difficulties sleeping, feeling irritable, feeling low, aches and pains, dryness in the vagina, loss of interest in sex, and difficulty concentrating. Of course, not all women experience symptoms, and those that do might find that they manage their symptoms very well themselves.
Does the menopause differ for women living with HIV?
Some studies show that women living with HIV experience menopause earlier (by 2 to 3 years), and that they experience more symptoms. But there is still a lot of work to be done in this area.
We know that the risk of osteoporosis (fragile bones) is increased in HIV and in women after the menopause. So women living with HIV who have reached the menopause may be at particular risk of bone disease.
Finally, our research has found that women living with HIV may face challenges in recognising and managing menopause symptoms, not knowing if symptoms are related to HIV or the menopause, and feeling “stuck” between GPs and specialist HIV services.
What can help us, as women with HIV, going through the menopause well?
If you are worried about symptoms, then you can speak to your hospital doctor or your GP. They should be able to help you. Women who have troubling symptoms can take hormone replacement therapy (HRT). This treatment replaces the oestrogen hormone that is lost as we get older. It is safe for most women and your doctors can advise you about it. It is available as tablets, patches, gels and creams. It is safe to take with HIV medication for most women.
There are also things you can do to help yourself. Regular exercise, a healthy diet, reducing alcohol and stopping smoking may all help with symptoms and also make sure you stay healthy well into older age.
What is the Prime Study?
Our team are conducting one of the largest studies to date in Europe, and the first ever in the UK, looking at how the menopause affects the health and well-being of women living with HIV. The PRIME Study is recruiting 1500 women living with HIV aged between 45 and 60 from 20 HIV clinics across England. Women are invited to complete a short questionnaire, with some women taking part in an in-depth interview so we can find out more about their experiences. All participation is confidential.
Is it too late to get involved?
No! If you are a woman living with HIV aged between 45 and 60 then we need your help. Together we can find out how to improve the health and wellbeing of women living with HIV as they get older. If you are interested in taking part please speak to your HIV clinic to see if they are involved in the study, or email me at email@example.com
Where can we find out more?
For more information about the menopause then please check out these websites:
Monday, November 7th, 2016
My name is Sue and I have been diagnosed with HIV since March 1997, at the age of 25. When I first went to the clinic to ask for a test I was told that I wasn’t in a ‘high risk’ group. As I wasn’t a drug user, I wasn’t having ‘promiscuous’ sex and I was a white European. I still went ahead and had the test and the rest is history.
I can still remember my seroconversion illness. For anyone who does not know what that is. Let me explain. Your body is reacting to the virus and you have flu like symptoms. Not everyone gets this as people have different reactions to being exposed to HIV. I remember lying in bed, dripping with sweat, aching body, and feeling completely exhausted. This only lasted a few days, and I was back to normal. The only reason I went for a test was because the man whom I had been dating turned out to be a rampant cheater. Ironically I had requested that we used condoms for the first 3 months. But after immense pressure from him not to use them, I gave up. Not my choice, looking back I should have stuck to my guns.
There was also lots of pressure for me to agree to have anal sex with him and I think it may be the reason I became positive: due to lack of lubrication and bleeding. There is so little information for heterosexual couples on how to have anal sex safely, but it is not an uncommon way to enjoy sex!
This was many years ago now. I went on to have 3 more children whilst being positive. All of them are negative. Back in 2000 you were encouraged to undergo an elective caesarean section. Things have changed and my most recent pregnancy I had the option to have a vaginal birth after caesarean. Only due to my age and extremely high blood pressure I opted for an early C section again. I was more worried about my blood pressure than my HIV.
Now I face the struggles that a lot of long term diagnosed women face. Looking for employment and suitable childcare. The Department for Work and Pensions (DWP) and the media seem to demonise anybody who is in receipt of any Benefit Entitlement. Notice the word Entitlement is in capitals. That’s because it’s your right to claim exactly what you are entitled to and not be made to feel like a second class citizen for doing so.
Lots of people who may have had a Disability Living Allowance(DLA) lifetime award are now facing the prospect of being made to look for work after an extensive employment gap and with poor health. A great option for anyone who is in this position is to become a part-time volunteer to upskill and receive training. This will fill employment gaps and help you to become ready both physically and mentally for re-joining the workforce.
HIV is not one of my regrets, but I am sad and angry that being HIV positive did not allow me the chance to have a mortgage to buy my own property, whilst the prices were still affordable. Now people living with HIV can get a mortgage but it’s out of reach for most first time buyers on a low wage.
Nowadays I have to deal with ageing and other health problems that come with getting older. My energy levels are non-existent and I worry about cognitive impairment possibly caused from the meds. In other words I have the memory of a goldfish but it helps to write everything down. Low vitamin D levels are also a cause of most of my symptoms, and since taking vitamin D supplements I have found a new lease of life.
Those health problems have taught me to always get checked for other underlying complications and to always go into the Doctors clinic with a list of things to ask written down.
Just a few words from someone who has been living with HIV for nearly 20 years: it’s not that bad and there are times when you forget you have HIV. Eventually, even when you remember you’re positive, it’s no longer an issue.
Thursday, November 3rd, 2016
For the first time in 20 years, the UK AIDS Memorial Quilt will be on display to the public at St Paul’s Cathedral, and then at community venues across London, to commemorate the lives of those lost to the AIDS epidemic.
Positively UK is proud to be part of the coalition of charities that have worked to display this irreplaceable piece of international social history.
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 UK quilt panels will be on display at the Cathedral on 23 November, ahead of the AIDS Quilt Trail which takes place across London on the weekend of 3 and 4 December, where people can see the quilts for free at a range of community venues.
Alongside George House Trust, Terrence Higgins Trust, Positive East, The Food Chain, and Sahir House, with support from Elton John AIDS Foundation and Gilead, we hope the exhibitions will help remember those lost, raise awareness of HIV to younger generations and help find a permanent home for the UK quilt to ensure its preservation.
The Quilts, on display to coincide with World AIDS Day, reminds us how far the UK has come in the fight against HIV.
HIV no longer stops those living with the virus leading long and healthy lives – but there is still much to be done to tackle stigma, stop transmission and diagnose the 1 in 6 who are unaware they have the virus.
To get involved on social media, use the hashtag #AIDSQuiltUK
“Collectively, the quilts are part of the largest piece of community art in the world – which shows just how important they are to our social history, and how special this event is.
“Thousands of people died from AIDS here in the UK at the start of the epidemic, and displaying this quilt coming up to World AIDS Day is a way to remember them and to reflect on how far we have come since the 1980s in the fight against HIV, thanks to incredible medical advances.
“I’m delighted to support the fantastic work the coalition of charities is doing to preserve this intensely moving piece of art and encourage everyone to witness this important moment in history.”
“The Aids epidemic and the appalling number of lives taken by it was all too often portrayed in the media as being about a faceless mass of unknown people.
“In truth, of course, it was an all too large patchwork of individual stories; of real people with names and lives, with loved ones and families and careers and talents never quite allowed to reach fruition. How better to represent that than through the Aids quilt, which gives individuality back to so many people who risked becoming mere statistics?
“It is both work of art and a vital social document, and I wholeheartedly give my support to the coalition of charities and it’s ceaseless work to make sure the quilt finds the home it so richly deserves.”
Friday, October 21st, 2016
I was recently diagnosed with HIV, started my meds straight away and thought I was doing OK. But I’m not sure how well I’m really dealing with it or how I’m supposed to feel.
Can you advise?
These days because modern HIV meds are so good, more people living with HIV than ever before are living healthily and able to continue life much the same as before we were diagnosed. As long as we pop those pills every day and take reasonable care of our bodies, there’s no reason why we can’t live a completely normal lifespan. This is great news of course, and for some of us this is where the story ends. We just get on with life, put it behind us and don’t worry about it. After all, it’s just a virus and the meds are taking good care of that. End of.
But like many things in life, it’s not always that simple. We might struggle to accept what’s happened, feel full of confusion about the impact it’s going to have on our lives and are worried about the future. After the numbing shock of it so many questions come flooding into our minds. Who am I going to tell? How will it affect my relationships? What about my family? All this can feel overwhelming. When I was diagnosed two and half years ago the first thing I did was go out and start drinking in a soho bar (which trust me is not a good idea after a large shot of Penicillin). By the time my mate finally turned up, I was a shivering mess in the corner.
The thing is, there is no set way we are meant to feel after a diagnosis. Everyone’s circumstances, reactions and ways of dealing with it are different. In my work at Positively UK, some people have come to me saying that they feel OK but that somehow they feel they shouldn’t and instead are waiting for some kind of ‘crash’. Perhaps this reflects the negativity and very real past horrors around HIV and AIDS that still sit in our collective conscience, and which then bump up against the new brighter realities of Anti Retroviral Therapy and undetectable viral loads. I guess we still can’t help asking ourselves the question: ‘is this really not going to kill me?’
But then some of us really do go through some sort of crash, especially if our lives weren’t going that swimmingly before the diagnosis and indeed might have contributed to why we got infected. Feelings of low self-esteem, guilt or shame – which we may have been feeling for years anyway around our sexuality – can be made worse by the HIV. But this is also where it can be something of a wake-up call, a realization that we need to deal with stuff and make changes in our lives. So a new diagnosis can give us a positive opportunity to face up to things we might have been avoiding. In my case, my working life had lost direction and I decided to get some life coaching. It really helped to bring some focus back into my life which I’m not sure I would have done without the diagnosis.
So what would I advise? Here are the 5 most important things I tell people who are recently diagnosed:
You will more than likely have been diagnosed in a sexual health or GUM clinic and will continue to get your care there, but in the NHS you can go to any clinic you like and where you think you’ll get the best service. If you’re not happy at the way you’re being treated, you can just go somewhere else. And as you’ll be having your bloods taken every few months as well as collecting your pills, you’ll want the experience to be as easy and painless as possible.
Many of us didn’t know much about HIV before we were diagnosed and we certainly didn’t get taught about it at school. Getting ourselves educated about HIV gives us the confidence to be able to ask our healthcare providers the right questions and helps to re-assure our loved ones that we’re going to be OK. Be wary of Google searches – there’s a lot of misinformation out there. Your clinic or an HIV charity can point you in the right direction.
Once we’ve had the news, we immediately start thinking about who we are going to tell, how we’re going to tell them, or how on earth we’re going to keep it secret. Of course we will more than likely want to tell someone. But remember there is no legal obligation to tell anyone (except in very limited circumstances) and once you’ve told them, you can’t undo it. Better to do it gradually, and get yourself ready and informed so that you you’ll be OK when the barrage of questions come your way.
It’s good if you can tell at least someone you trust, because you’ll feel the relief of sharing the burden and getting some emotional support. Even better, talk to others you know who are living with HIV and if you don’t know anyone then ask your clinic whether they have or know of any peer support services. Positively UK offers one to one and group support to gay men right across London as well as Recently Diagnosed weekend workshops. There are lots of us around that have been through the stuff you’re going through and can share the benefit of our experience.
Being diagnosed with HIV does marks a milestone in our lives and this undoubtedly has an impact on how we feel about ourselves. To start with it might feel like the world has caved in and we struggle to think about much else other than what’s happened. But soon enough we realise that we still enjoy going out with our mates and all the other things we enjoyed in our pre HIV life. So don’t be hard on yourself, just take things one day at a time.