Personal Stories – Men

Personal Stories of Men living with HIV – from diagnosis to disclosure, treatment to starting a family, these are the real stories of other Men living with HIV.

James’ Story

Monday, December 11th, 2017

James

Globally, there are 37 million people living with HIV. I am one of them and I want to share my story.

 

I was diagnosed HIV positive in the summer of 1996, aged 25. I got my diagnosis very early, within weeks of the original exposure. I have never suffered a day of ill health because of HIV, except for an exceptionally severe migraine shortly after infection, which was, most likely, my body “sero-converting” – i.e. starting to fight the virus.

I recall the day I received the news. It left me completely numb, both at the time and for years afterwards. I had no idea what to do with the information I’d just been given. It certainly didn’t feel like I was going to get sick or die anytime soon. I just went back to work at Roots and Fruits, wondering at the back of my mind whether it was even safe for me to be working in catering any more, serving food to people. It is safe, of course, and I knew that even then but it didn’t stop the worry.

Over the years I have been extremely lucky; my body has successfully kept the virus under control by itself for far longer than most people’s. The only impact on my life was a twice-yearly trip to the hospital for blood tests, which always came back with good results. HIV was nothing more than some words and numbers on the screen of my doctor’s computer and the addition of a bio-hazard sticker placed on any blood samples that are taken. (Such a ridiculous policy – as if the lab is going to take different precautions with my blood than they would with anyone else’s.)

 

All this changed in the Spring of last year, when my consultant raised the subject of finally starting treatment. She did so partly because my immunity – measured by “CD4” cells – was beginning to decline as it does for everybody as a natural part of the ageing process, but more so because the treatment guidelines were about to change. Previously, treatment was recommended only when CD4 cells had dropped to a level that indicates a risk of HIV-related illnesses. The new guidelines are based on a study that showed that early treatment, regardless of CD4 levels, gives massively better outcomes. The trial’s findings were so compelling, in fact, that it was stopped early so that participants in the control group could be taken off the placebo and started on treatment as soon as possible too.

For me, this felt like a huge blow. Starting treatment was a one-way door I didn’t want to go through. Having to take pills on a daily basis would give me a constant reminder about HIV. And it felt like a failure… the loss of my “medical miracle” status. I had fears about side effects, about whether I’d be able to adhere to the treatment, and what problems the drugs might cause to my wider health in the long term. However, after studying the research and talking with the amazing team at the clinic I decided it was the right time to start. I took the first dose on 24 June 2016; the day after the Brexit vote. My mood about that result very much matched my mood about starting meds!

The reality of being on treatment turned out to be very different though…

 

Firstly, the meds worked almost immediately. Like virtually everyone on treatment, the level of virus in my blood is now so low it’s undetectable, which means the virus can do no more damage. The meds work by blocking the process by which the virus takes over the body’s CD4 cells and converts them into HIV factories. By interrupting this process, HIV can no longer replicate itself and almost disappears – although it still hides out in lymph nodes and would come back if I stopped medication.

Being undetectable also means it is impossible to pass on the virus. Let me repeat that… it is IMPOSSIBLE for me to transmit the virus. No ifs, no buts.

The science is absolutely unequivocal and even the most cautious clinics now agree that U=U (undetectable = untransmittable). This is huge. It’s huge for public health, in that we now have a real chance to stop the epidemic by encouraging people to get tested and on to treatment. But it’s also huge for individuals like me, both physically and emotionally.

Becoming undetectable has lifted from me a burden of shame that was so overwhelming and suffocating I can’t believe I never had conscious awareness of it until it was gone. I used to worry if friends gave me their baby to cuddle, just in case it chewed my hand – like babies do – and maybe, just maybe, there’d be a tiny nick in my skin I hadn’t known about. Or if I cut myself when cooking I’d feel like the whole meal would need to be binned, even if no blood had touched the food. Before I became undetectable I felt dirty, guilty, shameful and unlovable. Worst of all, I thought I deserved to feel that way.

Over the past 18 months I have finally started to face up to the reality of having HIV. I have realised that the numbness I felt for 20 years was, in fact, my inability to deal with the enormity of the diagnosis. Ironically, the fact I didn’t need treatment compounded this because it enabled me to remain in a state of emotional denial. It seems incredible to me now (given my penchant for navel gazing!) that I could have been so disconnected from my feelings for so long.

 

And now? Well, life just gets better and better. I have never been happier. I have never been nor felt so well. I have never been so deeply content and living in the present. I have never felt so secure in my relationships and so connected to my friends and family. The constant low-level tiredness that I had grown so accustomed to has disappeared, now my body no longer has to fight this virus every single day.

And I feel so lucky and grateful. Lucky that my body was able to fight by itself until the meds got as good as they have. Grateful that I live in a country where high quality healthcare is free and available. Grateful that I have good support from people around me. Lucky that I haven’t even had the mildest side effects from treatment. Lucky that I can afford to live and eat well and take care of myself. The list goes on and on.

A few weeks ago I trained to become a peer mentor to support people newly diagnosed with HIV. The stories that others in the group shared were humbling and moving. Myopically, I had always thought of HIV as a gay issue. I had never considered what the experience would be like, say, for a straight man who lives with the complexities of having what has been stigmatised as a “gay disease”. Or a woman diagnosed during pregnancy and had to face her own mortality at the very moment she was bringing life into the world. Or a middle-aged woman who became HIV positive after sleeping with just one man following the end of a long-term relationship. Or the people who were diagnosed because of a late-stage illness, just weeks or months away from dying, were it not for today’s treatments. Or the people who don’t tolerate the drugs as well as I do and have to cope daily with unpleasant side effects. These are just a few of the stories I heard.

 

I came out as gay when I was 16. I believed fiercely at the time – and still do – that stigma, prejudice and misunderstanding can best be overcome by simply living life openly and without shame. Today, with this post, I am starting to apply those same principles to HIV. I am no longer ashamed of my status. Recently, I’ve started to disclose to more people and I’ve realised that with every person I’ve told, another layer of shame has lifted.

From now on I intend to live openly as someone with HIV in order to help break down fear and stigma and to educate people about the virus. Fear, stigma and ignorance stop people getting tested, but getting tested and getting on treatment early is the best way to both save individual lives and prevent the spread of HIV. PrEP (a daily drug that acts like a vaccine against infection) is widely misunderstood – and not just by the right-wing media. It needs to be made available as soon as possible, without pitting patient against patient.

 

Today, we have a chance of defeating this virus and this is me, standing up to play my part.

 

Testing Positive: Tim’s Story

Friday, November 24th, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Tim’s Story

My positive HIV test was part of a wider assessment following five months of tests and assessments to understand my poor health.

Prior to my diagnosis, my last HIV test had been completed some 6 years previously as I had never regularly tested and did not suffer from any STDs and was in good health.

The HIV test that confirmed I was HIV positive was taken by my regular GP as part of a series of assessments which over a number of months. I had been unwell for a while and I had lost weight, energy and motivation and was not generally feeling well. My health continued to deteriorate for several months before a HIV test was requested.

Once the result was advised, I was guided to Chelsea & Westminster Hospital for confirmation at the John Hunter Clinic. This was conducted on the following day of my original diagnosis and I was admitted into the Hospital with PCP Pneumonia.

I was shocked by the result. I was also disappointed with myself. I was part of the generation who could recall the 1980s “Don’t die of ignorance” and ‘Tombstone’ campaigns. I was uncertain about my future. I felt like the world had stopped and that was it.

My long-term partner has been amazingly supportive. He was tested and found to be Negative which brought its own challenges to our relationship but he has never stopped loving me nor helping me through this time.

I bought every HIV book I could find on eBay and Amazon in an effort to understand the literature around this subject. Indeed, I learnt quickly that this environment is changing with such a pace that older books (from the last few years) can be out-of-date as advances in medicines, treatment and research changes amazingly fast.

In addition, the NHS has been tremendous in providing counselling and one-on-one support through the John Hunter Clinic and the staff at the Kobler Clinic have been very reassuring. My Consultant has spent time answering my questions and providing care as required.

Positivity UK was a great peer support network after completing the “Recently Diagnosed” Course which opened my eyes to other gay men in my situation. This has been life-changing in bringing new friends who fully understand my position and can empathies with me. The monthly support group has expanded my knowledge of HIV such as medicine research and provided me with insights which have benefited my learnings with my condition.

I was diagnosed on the Thursday by the GP and on the Friday, at the Clinic, they started me off on Antivirals straight away. I was monitored at the hospital for several days whilst I recovered from PCP Pneumonia and continue to be seen by my Consultant on a 3-monthly basis until my viral load and T-Cell Count stabilizes.

My knowledge of life living with HIV was based upon the media images and my scant learning. Firstly, I expected I would die, and found it hard to accept that it was a chronic illness rather than life-threatening. I thought I would have legions on my face and body, and similar to Tom Hanks in “Philadelphia” would quite quickly deteriorate and die. I have learned so much from Positivity UK, reading about the subject and from my new friends. I was naïve and uneducated.

Secondly, I have learned from support of charity groups like Positivity UK that life continues and I’m more likely to die from smoking or being run over by a bus than from my HIV which has been invigorating. It has changed me: I live my life not in a hurry but with me as the priority. Good health and wellbeing will support my longevity.

Whilst the initial diagnosis is hard to accept, you have to look forwards and embrace life, and not focus upon what happened, why it happened and what could have changed. You have to accept that life is a journey and this is just one element of your life now and always, but YOU and you.

You also will learn that you aren’t alone: there are groups, charities and friends out there who will support you in this new world but it should not define you (unless you choose to).

Focus upon your own wellbeing, both emotionally and physically as YOU have to look after yourself and live life.

Testing Positive: Edwin’s Story

Wednesday, November 22nd, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Edwin’s Story

I tested positive in 2003 when I was admitted at the Aberdeen Royal Infirmary for a severe fungal infection. Before I got discharged, a consultant asked me if I would like to have a HIV test, and I agreed to it. When the result came, I was told I was HIV positive.

The test was the first I had had since coming to the UK in September 2002. The first test ever was done in Tanzania in 1995. I assume the result was negative because the test was a requirement for joining the country’s Intelligence Service, which I eventually was selected to join. However, I was not given the results.

So prior to testing positive, I just had one test in Tanzania, and the second one was in Aberdeen from which I tested positive.

I wasn’t really surprised because I used to lead a very risky lifestyle in Tanzania. Weird as it might sound but I had slept with over 300 women before coming to the UK in 2002. And just like many other young men over there, I hardly used condoms.

When I first got the result, I told nobody really. When I tested positive, I was sharing a flat with two other Tanzanians who were also my fellow university students. I chose not to tell them about my infection. The two people I felt so guilty not telling them about the HIV infection were my dad and mom, but I decided against disclosing my condition to them because it could have serious repercussions. To-date, HIV is hugely perceived as a death sentence, a curse.

I would say I just supported myself. I tried to get as much information about HIV as possible. Also, I made sure I do not miss my appointment at the local sexual health Clinic.

Another thing that gave me a lot of strength was my faith in God. Coming from a strong Christian family – despite having bedded over 300 women – I have always believe in the power of prayers. Not that prayers would have healed me but just getting the strength to cope with the HIV.

I started the treatment shortly after I tested positive. It has let me lead what I could describe as ‘normal’ life i.e. the only difference between a HIV negative person and I is just I am still HIV positive and they are not. Regarding U-U, it hasn’t made much difference to me because I would never have sex with a HIV negative person. But generally, it adds more meaning to the effectiveness of the treatments.

I had never thought of HIV before I tested positive. Crazy as it might sound, I used to fool myself that I had strong immunity that could overpower the HIV, which could explain why I rarely used condoms.

Although I had a cousin who died of AIDS, but it really didn’t get into my mind that I could contract the virus, hence no time to think about living with it.

If you’ve recently tested positive, this is what I’ve learned from my experience:

First, contracting HIV is no longer a death sentence as it used to be perceived in the early days.

Second, get into treatment.

Third, it’s okay to regret about mistake(s) done in the past which might have contributed to contracting HIV, but life must go on. It is important however, to lead a healthy lifestyle: eating well, doing exercises, avoid stress, and generally taking care of health – body and mind. If someone is religious, a good relationship with their Higher Being could prove quite useful especially if one couldn’t find strength in themselves.

Fourth, keeping oneself updated with HIV news, research, and stuff. Volunteering in the HIV sector could make a huge difference as it makes it possible meeting with other PLHIV. If no room for volunteering, then joining HIV organisations could also help.

Testing Positive: Mohammed’s Story

Sunday, November 19th, 2017

People living with HIV

Testing Positive

Many people don’t test for HIV because they’re scared of a positive result, they don’t think HIV affects them or they don’t think they’ve been at risk or are vulnerable to HIV.

In support of National HIV Testing Week 18-24 November 2017, Positively UK wants to remove the fear and stigma of testing for HIV.

During National HIV Testing Week we will be sharing the stories of seven people who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Mohammed’s Story

I would like to start my story by introducing self:

I am Arab Muslim Black HIV+ Gay guy

In the Arab and Muslim world, it’s known that if you are gay you bring shame to yourself and to your family. You will be disowned by your family, discriminated against by society and prosecuted by governments ‘in my country of origin its death penalty’.

I grew up and lived in a gulf country for more than 35 years, and that did not entitle me to citizenship or indefinite remain to stay. I had a residence visa which needed to be renewed every three years. Part of the renewal requirement is a medical check which includes an HIV test.

If the HIV result is positive, you will be deported from the country like a criminal with a big scandal and humiliation to you and to your family.

To avoid this, every time my visa was due for renewal, I come to London before hand and get tested at the Bloomsbury clinic.

June 2009 my HIV test result came positive.

All I could think of when I got the result is my family and my life back home. I was terrified and very scared. I had not time or chance to think about my health or treatment. I needed to run away, disappear and start a completely new life somewhere else.

The reasons I ran away, were the same reasons that gave me the strength to move to the UK and start a new life as asylum seeker.

I was alone in this, I had no family or friends for support. I could not tell anyone. The clinic provided me with counseling when I first got diagnosed. I attended one session then stopped. The councilor was white British who knew nothing about Arab and Muslim culture. He wanted me to focus on my self and well being, when all I could think of at the moment and I need help with is my family and how can I run away from home.

I should have asked for or provided with someone who could relate to my background. That would have been a big help.

I started my treatment 8 month after my diagnoses. I did not apply for asylum then and I had no plan. I wanted to have access to medication and be on a treatment plan in the UK in case I end up somewhere in the world with no access to treatment. I was really stressed out with this idea, I spoke to my doctor and explained that not having treatment is causing me anxiety. He then agreed to put me in early treatment.

I had no idea how my life would be living with HIV. But I had awareness before hand from all my previous visits to the clinic. I knew the difference between HIV and AIDS, I knew there is a treatment and I knew I am not dying. That was a big help for me to move one and concentrate on what matters and problems in hand.

It was a hard and a long journey but I now live my life normally like everyone else, without thinking of being handicapped with my HIV. I could only have this healthy life and peace of mind here in London. I am lucky and fortunate to have it. I cannot imagine how my life would have been back home or in the Gulf area.

I would advise anyone who is recently diagnosed to seek help ‘if needed’ wherever it can be found. There is no shame in asking for help. Also to remember you are not dying, there is treatment and hopefully soon a cure.

I would like to end my story by introducing self:

I am Arab Muslim Black Gay guy, Healthy Undetectable and I am not infectious or risk to others

Alex’s Story

Friday, April 21st, 2017

Alex

 

Friday 17th April 2015.

HIV result: positive.

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

 

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

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

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

 

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

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

 

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

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

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

 

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

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

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

 

Next step… finding a husband!

Cristian’s Story

Sunday, March 27th, 2016

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Cristian

 

Watch Cristian talk about his story

 

Mario’s Story

Saturday, March 26th, 2016

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Mario

I moved to this country approximately 6 years ago and work as a nurse for the NHS in a very prestigious London hospital. I have lived most of this time in south west London where a big part of the gay community use drugs or ‘chemsex’ as a way of meeting people and having some fun. I went down that path where I would take some drugs and go looking for sex in saunas, at sex parties – I did it all, on a couple of occasions I took P.E.P.

My relationship with drugs and sex got out of hand and started to affect to my work, my relations with friends and family and also my self-respect and well-being. At the last sex party I went to I met the person who is now my partner. We both agreed to start dating and try to leave the drugs and sex party scene. I then received a text from an old sex partner who told me he had been exposed to an STI (gonorrhoea) so my partner and I went to get tested and in my case, treated, as I had been directly exposed.

I booked an appointment while my mother was visiting me in the country so the 3 of us went there together for what I thought would be a quick injection and a quick HIV test that would show I was negative, like it had done many times before.

I remember when the nurse told me it was a reactive test, I felt shivers all over my body. Suddenly I felt scared for my future, worried for this new person in my life and worried for my job situation. I felt numb. I hoped it was a false positive so when they did the confirmation test I started crying and went and look for my mother who was in the waiting room. I knew quickly I had to get it off my chest before it become something hard – like coming out to your parents. She hugged me and told me she loved me and that everything was going to be OK.

Seconds after this I went to look for my partner who was getting tested and I found him crying and asked me if I was ok. I understood then that he had also been told he was positive. We hugged and kissed and this almost instantly made us stronger in our relationship.

In the clinic we went to, they informed us about this group called Gay Talk where newly diagnosed people with HIV get support and information about this chronic condition. I went there and met other people on the same page. It felt a relief that I wasn’t alone in this situation, I got a lot of information, met new people, and the experience made me feel more comfortable with the changes I needed to make in my life.

Not long after this my partner and I went into treatment, and we are both now undetectable which is the aim for all of us. Living with HIV has made us more aware of the changes we needed to make in our lives.

I went back to the gym, have become stronger and feel better about myself. I feel very connected with my partner in every way as we have developed a new level of trust and strength because of all we went through together. My relationships with friends and family have gone back to ‘point A’ and I am happier that I have been in the last 6 years. This is also reflected in my work situation – everyone has noticed the change.

I guess that contracting HIV was what I needed for me to reconsider what I was doing with my life and working on myself. I feel happier and better, more confident and balanced that I did before. In a strange way being positive has saved me from myself.

Jamie’s Story

Friday, March 25th, 2016

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Jamie

 

Watch Jamie talk about his story

 

It was November 2014, and the Terrence Higgins Trust were doing a drive on Facebook for home testing kits for HIV. I’ve always practised safe sex, but like to get tested every 6 months, because accidents happen. Very soon it became all too evident that an accident had happened. I got a call late on a Monday night telling me there had been ‘a detection’ and I needed to go for a confirmatory test.

I went to my local clinic, but when it came to the test it’s all a bit blurry. All I remember is that I never saw that dot appear… that dot that would result in some major hurdles and challenges in my life. I didn’t see it because the last thing I saw before tears blurred my vision was the doctor looking up at me with an expression that said it all. I fell to pieces.

That night I called a close friend and told her. She reminded me that my father would always be my greatest supporter and that parents want to be able to worry about their kids, so I phoned my dad next. He remained true to form as an amazingly supportive father!

That weekend I attended a workshop for the recently diagnosed at Positively UK. I entered the workshop an emotional wreck and left full of optimism and lust for life. In the New Year I started treatment. I had not been receiving the best treatment at my clinic, and as Positively UK had explained, I was in charge of my treatment, so I moved my treatment to a clinic in London. Due to my lifestyle and career there were only a few options open to me. So my doctor had to go to the virtual clinic, a counsel of doctors, to put my case forward to get authorisation to give me the treatment I wanted. I got permission, but on that same day a new drug became available in the UK that had great results in Europe, so I took it.

Treatment brought few side effects; some mild tiredness and nausea if I took it without food. It’s all about planning. In just over 3 weeks I was undetectable. I felt free; my fears of transmitting were gone – My fear of dating and disclosing not so much so. I dreaded having to disclose my status to people and what their reactions would be. It wasn’t long however until I found my resilience and realised, I’m a romantic… and if someone loves me, they’ll want me ‘warts’ and all. I realised I didn’t want to limit my window of partners to just positive guys, someone amazing might be negative and love me how I am.

I’ve been on quite a few dates since then and found that it’s not much different than before. I’m ready to discuss my status when it’s time and if they can’t handle it, it wasn’t meant to be. I’ve been positive since November 2014 and I can tell you that my life has never been so ‘positive’. I’ve got an amazing support system which has resulted in amazing friendships and ultimately I am lucky, in that I can say my HIV hasn’t affected my life in a negative way. I’m alive, I’m happy and I’m too stubborn to quit!

Ismael’s Story

Thursday, March 24th, 2016

Ismael

Hi I’m Ismael, and I’ve been HIV positive since 2013. I had the news when I was doing my twice yearly routine blood test. I didn’t know what HIV meant at that time. So I had to learn what´s that? And how to deal with it. Not a big deal, but definitely something really new for me. I’d never heard about it, and nobody had talked to me about it before.

In my case the first people I told were my flatmates, and my closest friends. I didn’t tell anyone from my family because I didn’t want to worry them then – that’s the last thing I wanted for them or for myself.

My life didn’t change at all. I just had to take the medication to keep the virus quiet in my body and obviously look after myself better – such as making nice meals, practicing more sport, resting properly, and having good habits in general. These are things that I was doing already, so there wasn’t much to change to my routine.

Then, came the moment to choose the right medication for me. In my case I’m taking Kivexa and Sustiva once a day, before I go to bed, because probably it helps me fall asleep and if I’m going to feel a bit dizzy, it’s better to take it before sleeping. It’s good take them around the same time every night.

Also, I’m going to mention all the support I got from Positively UK. I could say some names, but I won’t for professional and personal reasons. But I really appreciated it. Since I started to enjoy the Gay Talk group, I’m stronger and even more open minded about the HIV.

If I say the word: Sex, don’t be scared AT ALL. The gay community knows about HIV very well, and most of them are not afraid to have good sex with people with HIV. What I do, if I see like I’m going to have sex with someone, I feel free to say, I’m HIV positive. I prefer be honest from the start so as not to have surprises later or maybe make the other person uncomfortable. Also, not far from this point, if your condom breaks and you think you might have had exposure to the virus, you can go to the hospital – even after two or three days – and get something called PEP which you take for 28 – 30 days: it will destroy the virus in your body.

At the beginning I had my bloods taken every three months, but once the results were going well, then I started to have bloods taken every 6 months together with 6 months’ supply of medication. That helps a lot. It makes it possible to travel.

So, yes, yes, yes!! Life is still beautiful with or without HIV. And now also, I’m planning to move abroad, so new adventures are coming for sure and I’m really up for that.

What I have learnt from all this is to be HAPPY always.

Never give up and always SMILE

Roland’s Story

Wednesday, March 23rd, 2016

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Roland

 

Watch Roland talk about his story

 

I was given my diagnosis on 1 September 2006. My partner had to give me the diagnosis. I was given two weeks to live. I was HIV+. I had AIDS. My AIDS-defining illness was Progressive Multi-focal Leukoencephalytis, a brain disease.

The first person I told was my partner’s closest friend. I wanted him to have somebody around him who would know in case something happened to me. She was fine. She was informed. She reassured me that she would make sure my partner was OK. I told my partner that I had told her.

I had no choice about starting treatment. As my carer, initially my partner had to make sure I took the right medication at the right time. It was a struggle at first, but now it is almost second nature. I’m on my 7th regime, due to side effects of the other six. I’ve now been on this one for almost three years and, most of the time, it seems to be going fine. I have been undetectable and with a CD4 count hovering around 600 for about 18 months. Something to be grateful for!

Being diagnosed has had a big impact – a positive (no pun!) impact. I do a fair amount of voluntary work in the HIV sector and I became Chair of the Disability Staff network at work. It has given me something useful and constructive to do and it has brought me into contact with so many wonderful, inspirational people, that I would never have come across before. So I am grateful.
I have had brilliant medical support. And support from organisations such as Positively UK, Terrence Higgins Trust, National Long Term Survivors’ Group, and others. And support from other HIV+ individuals along the way. From friends. And, most of all, from my partner. He has stuck with it, somehow. And for that too, I am grateful.

The things I am less grateful for? The dentist who refused to treat me; the ping-ponging backwards and forwards between my HIV specialist and GP; the knee-jerk reaction from the administration at work who suggested very strongly that I should take early retirement on medical grounds when I disclosed my status to them; the aches and the pains (but hey, I’m not getting any younger!); the sudden overwhelmingness of it all that still… occasionally… hits me.

But these things are minor, very minor, in return for still being alive. And still being grateful.

Testing Positive: Chris’s Story

Friday, November 27th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Chris’s Story

In 1992, I became unwell: nothing specific, but losing weight. At that time I was not considered to be in a ‘high risk’ group, straight, professional, white – so I was tested for meningitis, appendicitis, even obscure tropical diseases (my work had taken me to countries with high HIV prevalence). Eventually a doctor ordered tests for ‘everything’ the results came back: I was HIV positive. I didn’t know much, but I knew there was no treatment. It was devastating not just for me, but for my wife and my family. These days I know an HIV test would have been offered to me much earlier, and that the treatment is by and large, highly effective and highly tolerable. We have come a long way in a short time.

After testing, my health quickly went downhill, I was given an AIDS diagnosis almost immediately and was seriously unwell. I think I was saved by the anti-retroviral treatments in 1996 and the love of my wife and family and the grace of god and the NHS. I was given the best of care, free and with access to the latest drugs. In those days the drugs rapidly become useless as resistance set in, unlike the modern drugs, which give you a number of treatment options.

There is hope now. I can remember, before treatment, telling my doctor that I was trying to stop smoking, and her reaction was did I really want to stop? She knew that the future was bleak, even stopping smoking was a bit pointless. After the ARV’s kicked in in the mid 90’s I signed up for a physical rehab course at a gym in my hospital. Two nurses had to help me get to the gym. Today I regularly train and am fit enough to train others in the noble art of boxing.

For my age, for any age, I’m fit and well. HIV is something I have to stay on top of; take my meds regularly and engage with my HIV doctor, but it doesn’t stop me from doing anything I set my mind to. Now there is lots of hope, effective treatment and I have a healthy spiritual outlook… and I’ve quit smoking!

Testing Positive: Marc’s Story

Thursday, November 26th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Marc’s Story

I took the HIV test in 1986. It was the early days of the epidemic in the UK and the test had just become available, my boyfriend at the time suggested going along and it felt the right thing to do.
I had seroconversion illness about six months before, but I put it down to a bad case of the flu. I had no symptoms at the time of my test, so I expected a negative result.

I met with a health advisor before the test and was given an hour of pre-test counselling (yes that really was a thing) to prepare me for the result. I then had to wait two weeks for the result. This was a time when rapid HIV testing was only a dream and we still talked about the ‘window period’.

When I got the result I was shocked and devastated. I remember walking around in a daze for weeks. I was diagnosed at a young age, ten years before the effective treatment was available. HIV was still considered a “death sentence” and the Dr’s prognosis was that I might develop full blown AIDS within a year.

The very first thing I did was to contact another person living with HIV as I figured they might understand what I was going through. It was the best thing I ever did. I spoke to someone at Body Positive, who reassured me that I wasn’t alone and things were going to be ok. Just having someone else who could empathise with the day-to-day reality of living with the virus was some important.

The excellent care I’ve received from my health care team, the support of my close friends and family helped get me through. However the support I’ve received from other people living with HIV has been invaluable.

My reality today is very different to 30 years ago. HIV was still considered a ‘death sentence’ when I was diagnosed and for 15 years I felt that ill health leading to death might occur at any moment. Now I know that my HIV is a long term manageable condition and I’m more likely to die of something related to old age than I am from an HIV related illness.

My reality in 1986 was also that I was infectious and could pass on HIV to my sexual partners. Today with effective anti-retroviral treatment, my viral load is undetectable which means the HIV is as such low levels in my body that I am now uninfectious and the chances of me passing HIV are virtually zero.

Testing Positive: Jim’s Story

Tuesday, November 24th, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Jim’s Story

It was early in 2014 and I was living in Brazil. One night when going to bed, I discovered a rash all over my upper body. The doctor I saw there didn’t seem to know what it was despite taking a blood test. The rash didn’t go away so eventually I decided to fly back to the UK and go straight to the sexual health clinic for tests.

To be honest, I felt a sense of relief when I got the result. I’d been feeling anxious for nearly 6 weeks wondering what was wrong with me and although it was a big shock, it was good to finally have a firm diagnosis. The rash turned out to be syphilis and was easily treatable. The sensitivity in the way the clinic handled telling me about the HIV was exemplary. I couldn’t have been in better hands.

After walking out of the clinic I was meant to meet a friend who worked nearby but he was stuck in a meeting so I went to the pub and had a stiff drink. This probably wasn’t the best idea after a shot of penicillin and by the time my friend arrived, I was shaking and feverish. He sent me back to his in a cab and joined me after work. Another friend came over and between them, they helped me through those first difficult hours.

I’ve always been a very open and honest person and so I wanted to tell my family and friends. I was amazed and grateful for the support and understanding I received from every single one of them. Not a single bad reaction, which I guess surprised me. I also attended a recently diagnosed workshop with charity Positively UK who provided so much help with those questions about day to day living with HIV. Meeting others in a similar situation was invaluable in helping me realise that I wasn’t alone in the feelings I was experiencing.

Treatments have developed so fast in the last few years, whereas public awareness hasn’t kept pace with the realities of living with HIV today. Before I was diagnosed I knew it wasn’t a death sentence, but I had no idea about undetectable viral loads and that modern treatments effectively make you healthy and uninfectious.

I think if more people realised that it’s possible to live a completely normal life with HIV, then attitudes to the virus would really start to shift.

Testing Positive: Joshua’s Story

Sunday, November 22nd, 2015

People living with HIV

Testing Positive

A main barrier to some people taking an HIV test is fear of a positive result and the impact it might have on their lives.

In support of National HIV testing week 21st – 28th November 2015, Positively UK aims to remove the fear of testing and worry of a positive result.

During national testing week we will be sharing the stories of seven men and women who have had the HIV test and received a positive diagnosis.

We hope this diverse range of experiences will reduce the anxiety some people may have about testing and will enable those who may test HIV positive to seek support to live well with HIV.

Joshua’s Story

I had a HIV test on the 31st October 2014.

I was always scared of people who had HIV, if someone told me they had HIV on a dating app, I would cease the conversation and talk to someone else. Being the age that I am, in my 20s, I had only heard the horror stories from the 1980s, and seen the films where the gay men with HIV die at an early age. Going for a HIV test made me feel very anxious, because I was scared of the unknown, because I was ignorant to what living with HIV was like.

I had decided to go along to the clinic because I had conjunctivitis in my eyes for the second time in as many weeks. I had read that recurrent conjunctivitis could be caused by chlamydia, so I thought I’d get checked out for that.

Whilst I was at the clinic I was offered a 60 second HIV test, and I thought I might as well have one as I hadn’t had one for a while, I hadn’t been having unprotected sex, so assumed that the result would be, as every test before that had been, negative.

I was told by a nurse that it was reactive, I had no idea what that meant. My heart sunk… My mind became clouded with confusion, stress and anxiety. What did this mean? I had only ever heard of the test result being positive or negative, not reactive. What reactive did mean, was essentially a positive result. The 60-second test was basically checking for HIV antibodies in my blood, and they were present.

I was on a break from work when I went to have my test, and it became apparent that I wasn’t going to be heading back to work straight away. I was taken from the room I was diagnosed in to a different room with a health advisor who had a lot of experience and training to deal with someone that was newly diagnosed. She asked me if I had friends I could talk to, a family member I could call, anyone that I could trust and could support me at that time. My brother was at work, his wife was studying, I didn’t feel I could talk to anyone. I couldn’t drop a bombshell to any friends or family as anyone that I trusted enough was in a different town to me, I couldn’t tell someone if they couldn’t be immediately available for me, because I was a wreck.

I was due to go to a really good friend’s wedding the next day, and I really couldn’t miss it, so I kept quiet and didn’t tell anyone. I went to the wedding, took my mind off my diagnosis, and waited until the Sunday until I told my best friend Michelle, and then my mum shortly after. It was a very intense experience, I felt like I was grieving. It was traumatic.

The first few months were difficult, so I thought by telling people in my family or telling my friends that it would lessen the blow, I felt like this would help me deal with it… So I told a lot of people. They were carefully selected people, of course. I told my best friends, my family and one person from HR at my work, just in case I needed time off.

Telling people all of this was incredibly difficult, but I think it was necessary. Sometimes it was cathartic. When you tell someone something that is so personal, you are opening up the most vulnerable part of you, and some people find this incredibly touching. I have connected with friends on much deeper levels because of how much I have shared with them. This all helped me, and definitely helped normalise the situation, because I had their support and love.

It has been just over a year since my diagnosis, most days, I get up in the morning, I head to the gym, I go to the shops, and then I head to work. I live my life; I go out with friends and enjoy myself. Sometimes I completely forget that I have HIV, because it has become such a small part of me, that it doesn’t define me, but it is a part of me.

My phone alarm goes off at midday and I am reminded to take my daily pill. Every day for about 30 seconds I am reminded that I have a virus in my body, but I know it is under control. For those thirty seconds, I am reminded that the medication (which causes me zero side effects) is doing an amazing job at suppressing the virus, it reminds me that I won’t pass the virus on to others, it reminds me that I have been given the possibility of living a normal, healthy life by the wonderful NHS. I take this pill, and then, I go back to work.

I am Joshua, I am a gay man, I am a brother, I am a son, I am a nephew, grandson, uncle, cousin and friend…

I am HIV positive.

Graeme’s Story

Saturday, August 17th, 2013

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Graeme

THE EARLY YEARS

I, like many others, first heard of HIV round about 1990 when I learned of a fatal illness, which appeared to be affecting gay men in the US, HIV/AIDS. I felt relieved that I had an awareness of how to take appropriate precautions to protect myself.

DIAGNOSIS

However in 2004, having suffered repeated occurrences of mouth ulcers, I was advised to have an HIV test. By that stage it was known that people had died of AIDS whilst others had been diagnosed as HIV positive and survived for many years. It seemed that living with HIV had become a part of being gay and it seemed to have created a tremendous solidarity within the gay community.

Before having the test, people usually had to have counselling to assess their mental stability to deal with a positive result. But because of my circumstances I did not have this, however I felt confident that the result would be negative. I remember sitting in the waiting room of the clinic waiting for the Charge Nurse to call me in and give me the result. I so much wanted to get up and walk out, as I was sure I was wasting their time, but something held me there. The Charge Nurse came out and called me in. I followed her to the consultation room and when I sat on the chair to hear the result, she turned to me and asked what I expected the result to be. I replied without hesitation “negative”. She looked at me and very calmly said, “the result has come back positive”. I broke into a sweat, which quickly turned to ice and the only words which went through my head were “Oh my God, it can’t be me”. As I had previously worked at the hospital and was known by many members of staff, she asked if I wanted her to inform the consultant in charge of the Clinic and whom I had previously worked for as a PA or whether I wanted to attend a different Clinic. I knew that the Consultant was a world authority in HIV/AIDS and said that I would like her to be informed.

I was then introduced to Robert, the sexual health adviser. He spoke to me at great length, telling me all about the current medications and how things had moved on since the early years. I felt numb with what he told me and still felt totally unconvinced that the result was positive. I had to give more blood for testing and had to go back the following day for further results.

In the meantime the Charge Nurse had informed the Consultant and before I had even got home from the clinic, she had rung me on my mobile to suggest that I see her the following day. I realised how little I truly knew about HIV that day!

TREATMENT

In 2004 when I was diagnosed I started immediately on anti-retroviral treatment. This intake of medication into my body was difficult to deal with initially and for the first time I really felt ill and really knew that I had HIV/AIDS. Although outwardly I appeared to be healthy, I knew that inside me was a virulent virus eroding my immune system. I was on tablets called Combivir and Sustiva. One of the drugs in Combivir is called Abacavir and in some people this can react badly with their liver causing liver failure. Although, I was fortunate in that I did not have this reaction to the drug, I began to suffer from peripheral neuropathy, a numbing sensation in the extremities of the body, also related to Abacavir. I then started on another combination called Sustiva, Tenofovir and 3TC. This proved to be successful and on this treatment, my viral load started to drop and my CD4 count started to rise.

MY LIFE TODAY

Almost ten years on my life is very different. Sometimes I look in the mirror and I don’t recognise the guy on the other side but I still like him. I am now on Atripla and I take one tablet every night and will do so for the rest of my life, unless a cure is found. I have to attend hospital every four months which involves taking up to a half day off work. During this time I have to give blood and have routine screening with a nurse. I then see my HIV consultant to discuss any problems I may have and then phone a few days later to get the results of the blood tests. The blood tests are for: CD4 count, viral load, haemoglobin, kidney and liver functions, pancreas function, glucose, cholesterol and lactic acid levels. My CD4 count is now just below 600, which is acceptable, whilst my viral load is classified as undetectable. This means that it is less than 50,000 and therefore considered dormant. I still suffer with some opportunistic illnesses, but these are manageable and similar to anyone who is HIV negative.

HIV TODAY

HIV is no longer “flavour of the month”. As the volume of AIDS related deaths slowed down with the new medication, the hyper media attention seems to die with it. However, HIV is still very much alive and the number of people being diagnosed yearly is rising dramatically. The issues facing newly diagnosed people today are very different to the issues which faced gay men in the 1980s. In the 1980s, gay men newly diagnosed were advised to medically retire and prepare for death. Today anyone being diagnosed is offered different advice. People are encouraged to remain in the workplace and to live as normal a life as possible. A new range of issues now present. Career development is not something to be pushed aside and people will still want to have lasting relationships with positive or negative partners and to have HIV negative children. All of this is possible.

Thank you, my name is GRAEME

Father, son, brother, uncle, nephew, neighbour, friend, colleague, partner, employee and living with HIV.

Graeme is a 53 year old HIV positive gay man, in a serodiscordant partnership, in full time employment, and with three adult children. In his spare time he is a volunteer peer mentor at Positively UK and a keen participant in amateur dramatics.