Personal Stories of living with HIV

Personal stories of people living with HIV.

The Catwalk for Power at the International AIDS Conference

Wednesday, July 18th, 2018

The Catwalk for Power, Resilience and Hope – an initiative started by women with HIV in London for International Women’s Day 2018– is going global next week with a workshop at The International AIDS Conference, in  Amsterdam. Here is Laura’s account of why the Catwalk for Power is important.

After diagnosis, I lost my confidence and self-esteem. I couldn’t get myself to think I deserved the best in life.

Being part of the Catwalk  for Power was transformative, it was organic; it was us, women living with HIV, everyday women who can often be overwhelmed with social inequalities and intersections that can make us underestimate our abilities, who lead and created the event. Everyday women who sometimes forget how much skills and resources we have as individuals and as a community,

When we started with the idea of the Catwalk for Power, we had no clue how exactly it was going to pan out, as we had no blueprint and we were struggling with finances. But we used our life experiences as individuals, mothers, professionals, peers, self-managers, activists etc., as we went on from organising one workshop to the other.

We all had journeys of self- discovery, finding out what we had forgotten we could do, what we didn’t know we could do, or reaffirming what we knew we could do. Using validation, and encouragement, we gave each of us a chance to participate and make decisions and contribute according to our abilities, taking on bigger roles, building confidence. Week after week, we were like flower buds opening up a little bit more

We learnt, we socialized we had fun, we challenged each other and we supported each other. Naturally we had moments of doubt and dips in confidence, but we found innovative and creative ways around them. As always, we were resilient and determined to self-care, look after ourselves, and see ourselves as deserving women, who often put other people first.

We had a variety of workshops to give each woman a choice and a chance to express herself the best way she could: we did hand crafts, watched films, discussed and found spaces to play, to be ourselves, ease off.

On the 7th of March 2018, the day of the Catwalk, for the first time since I was diagnosed I felt pride! Pride at being a woman living with HIV and having the opportunity to be part of this incredible group of resilient women who created a valuable safe place. By creating the Catwalk, we invented a space where to meet each other, search, find, be creative and empower ourselves,

We all strutted our stuff on the catwalk that day, even those who had no plans of walking until then, did: because at that moment, we realized that we are all deserving. We are already enough as we are.  We are truly worthy.

Now, I will be part of the delegation taking the Catwalk for Power to the global scene at the International AIDS Conference in  Amsterdam – and yes you can still support us by donating here: https://www.justgiving.com/crowdfunding/catwalk4power. This is something that a year ago I would not have believed I could do… I am now looking forward to the future, full of possibilities, my personal life, career and outlook in life have changed because I have finally started to believe I truly deserve it … this is what the Catwalk for Power has been about for me: we didn’t wait for anyone; we did it ourselves by ourselves. We created an enabling environment as women living with HIV to remind ourselves of who we really are, finding the power within ourselves and our community as women!

What we achieved was a big lesson for me about the power of grassroots, taking ownership, creativity, community, sustainable women spaces, collective will and partnerships.

WE ARE HERE!

Bakita, the activist and young poet who introduced us on the night said; “WE ARE TAKING UP SPACE” because THE POWER IS OURS

Commissioners and providers of services, policy makers and all other stakeholders need to work in partnership with women living with HIV to actively support and fund sustainable women centred peer spaces. These spaces are essential in building women’s leadership and capacity to effectively participate in the decisions affecting us, and in enabling us to live well with HIV 

The Catwalk of Power Workshop  

22nd International AIDS Conference – Amsterdam

Tuesday 24th July

11:00 am 12:30 pm

Global Village Youth Pavilion

 

The Catwalk for Power is a collaborative initiative supported by Act Up London and Positively UK.

 

 

 

Proudly Undetectable

Friday, July 13th, 2018

 

Positively UK, staff, service users, peer mentors and associates strutted through the streets of central London on Saturday 7th July for Pride in London. David – Peer youth worker,  organiser of Positively UK at Pride in London this year, tells us how it went and why Pride still matters to us.

 

 

It was a bright sunny day, perhaps too much so, but armed with sun screen and litres of water we congregated before the march in Regents Park. Everyone was in bright spirits and it was great to see such a mix of people involved. There were staff, peer mentors, service users, family and friends, turning up one by one. We put on a bunch of Positively UK t-shirts, pride coloured face paints, copious lashings of glitter and soaked up the great atmosphere of the event, as we got ready. We unfurled our Positively UK flags, and our banner that we would carry throughout the march which proclaimed: ‘Proudly Undetectable.’

We marched from Park Crescent, Regents Park, through the 1.5-mile route ending in Trafalgar square. The streets were lined with a crowd, estimated at close to a million supporters, cheering, waving and giving support. We made a statement that HIV is not over in 2018, and we do not sit quietly, but march through the streets.

The theme of pride this year was PRIDE MATTERS. Today in the UK, (mostly) equal rights do not mean real equality and justice for all. Hate crimes towards LGBT+ people, on the streets of London, have doubled in the last 5 years. Still today 75% of LGBT+ people fear showing affection in public for fear of retribution and violence. In Northern Ireland there is still heavy discrimination with same sex marriage being outlawed. Around the world it is still illegal in 72 countries to engage in same sex relations, and in 10 of those it can carry the death sentence. Transgender individuals around the world face truly inhumane levels of violence and discrimination. Trans people have the highest level of HIV, with abysmal access to health services including HIV prevention, testing, treatment, and care. We have a long way to go.

On the march, passing the cheering crowds I was pondering something to myself. If you would have asked me in my first few years post-diagnosis, if I would walk with my head held high, wearing a t-shirt saying, ‘proudly undetectable’, holding a banner with the same text, I would have said ABSOLUTELY  NOT. However, times change. I was not the young man, terrified by my diagnosis a few years ago. I am proud of what I have achieved through volunteering in peer support and subsequently working with Positively UK.

So, for myself personally It was a milestone on my journey living with HIV. I have a choice, when looking at my diagnosis, to live in pride or in shame.

Marching at Pride as an openly HIV positive person reinforced in myself the belief that the only shame in living with HIV, is that which society and others place on us. We write our own stories, and last Saturday I put my shame to rest.

 

 

 

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: Jane’s Story

Thursday, November 23rd, 2017

People living with HIV

Testing Positive

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

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

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

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

Jane’s Story

I tested positive two years ago in November 2015.

I’ve always believed that everyone who is sexually active should check their sexual health. Especially nowadays with online dating websites and applications we are all more exposed to risk. I tested in my local Sexual Health Clinic. I had tested before when I started or ended a relationship and in a few instances when I had unprotected sex without knowing the status of my partner.

I am a heterosexual woman and I have a pretty standard and “risk free” lifestyle however like most girls of my age I dated and I had sex and while most of the times I used protection there is always that time a condom slips or breaks or that one time that you don’t use protection in the heat of the moment thinking: “oh come on, it cannot happen to me…”

It was a routine test. I had recently ended a relationship. I had suspected my ex-partner had not been completely honest with me so I decided to get tested for peace of mind. At first I was numb. I still remember every moment. Everything the nurses and heath advisor were telling me sounded surreal like I was just having a bad dream. Then the shock hit me the day after.

I am glad I was diagnosed in a sexual health clinic since I received immediately a lot of support. I had the finger prick test which gives you a result in a couple of minutes so I didn’t have to wait too long. Also the staff there was very supportive. They gave me the news in a very calm, respectful and empathic manner. They immediately “normalized” the diagnosis telling me that I was going to be fine and that nowadays there are plenty of medicines available with very few if no side effects. They also reassured me that since I was diagnosed just a few months from my infection the prognosis was very good and that my immune system was not seriously damaged yet.

The same day the health advisor suggested me to contact Positively UK since they offered peer support. As much as it did not sound of great comfort, in that moment the idea that I could contact someone in the same situation made me feel less alone and gave me some encouragement.

I started treatment three months after the diagnosis. Since my immune system was still very strong the doctor advised me that I could take my time and that there was no need to rush. I let Christmas pass and I took a bit of time to do some research on the various medicines. Once I made up my mind I went back to the clinic and I told the doctor I was ready to start straight away and so I did the day after. Looking backwards I would probably start even earlier now. The web is full of bad and outdated stories about side effects which can be scary and confusing. I had none of those side effects.

Starting treatment made me feel in control of my own health and gave me confidence around other people. I am aware that being undetectable the virus is suppressed so unable to damage my immune system so I can lead a healthy and normal life. Also being undetectable I’ve never felt being a “threat” to others or being “dirty and infectious”. It also gives me confidence when challenging ignorance from others.

My life actually has not changed much since my diagnosis. I never missed a day of work, I had a promotion this year, I still travel for work and leisure and I still have wonderful friends around me. From a physical point of view I am no different from when I was HIV negative. I have no side effects from medications, I am strong and healthy, I am actually in a better shape since the diagnosis motivated me to look after myself more.

I would be lying if I said that this was very easy. Emotionally it was hard at the beginning and I had low moments however most of it has to do with internalized stigma and attitude one has to life. Most people I disclosed to have been very supportive. In some cases I experienced some level of ignorance but every time it was an opportunity for me to educate others.

Everybody’s journey is different and people have different ways of overcoming obstacles. What helped me was connecting with other people living with HIV and getting peer support from charities like Positively UK. An HIV diagnosis can be very scary and isolating at the beginning, however there is support out there and in my case it was fundamental to keep an optimistic approach.

Most of the times self-sabotaging will be your worse enemy. Believe in the scientific evidence and reject old and wrong myths on HIV as this is now a very manageable condition with a near to normal life expectancy.

Testing Positive: Edwin’s Story

Wednesday, November 22nd, 2017

People living with HIV

Testing Positive

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

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

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

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

Edwin’s Story

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

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

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

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

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

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

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

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

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

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

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

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

Second, get into treatment.

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

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

Testing Positive: Marcia’s Story

Tuesday, November 21st, 2017

People living with HIV

Testing Positive

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

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

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

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

Marcia’s Story

I was diagnosed HIV positive in pregnancy.

I would test before every new relationship, but I wasn’t asking my partners to test. I had only been condom less for three months while trying for a baby, so found out early.

Finding out the result hurt, but a lot of light bulbs went off in my head, like when I went through seroconversion and my partner trying to tell me but never getting there.

I treated this diagnoses like I had diabetes just got on with it. I think I had to support my family not the other way around. I had this new life I was going to have to look after as well as my first child I had no time to really think about it, that came later.

I started treatment straight away, as I was pregnant. Treatment meant having a life with my kids, so I did this religiously. I had no side effects and was just having a normal horrible pregnancy, morning sickness and cravings.

As for U=U, it’s the best thing ever. This has given me even more confidence in the bedroom, not that I wasn’t before I now have options on the kind of relations I have and with whom… anyone I chose to. I am in a committed long-term relationship with a negative person which shows the medication really works.

Living with HIV is very different to what I imagined it would be like when I was first diagnosed. It makes no real difference only if you allow it to.

Knowledge is power, this works in every part of your life so find out as much information on your health as you can. There will be a health team there to help and support you but at the end of the day its always your decision on your healthcare.

Testing Positive: David’s Story

Monday, November 20th, 2017

People living with HIV

Testing Positive

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

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

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

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

David’s Story

I was diagnosed as HIV+ at 09:05am, November 3rd 2014, aged 25. A bright morning with a cold, crisp breeze that let you know winter was around the corner. I had tested the week before in my local GUM clinic. At the time I would visit the clinic every 3-5 months for routine screening. I had been really unwell the month before with an unusual illness, that it could be HIV had crossed my mind, so I had my suspicions.

Suspicions however did not prepare me for the news. I was devastated. I was conscious of other STI’s, but did not think that HIV really effected young people. The previous few years I had been struggling with my mental health, unemployment and being unable to support myself independently. I had hit rock bottom. My diagnosis felt like evidence that I deserved the situation I had found myself in.

I knew that I needed to break down my barriers and ask for help. Through it all I have been gifted with great friends. I borrowed some money and spent two weeks visiting those closest to me. Getting the weight off my shoulders was the greatest thing I did in those early days. I do not think I would be alive today and flourishing without their love and support.

I started treatment 10 months later on my clinician’s recommendation, though if given the choice again today I would start immediately. Being on treatment helped me shed the shame around my diagnosis, I was taking control of my health and my life. I quickly became undetectable, and I learnt that If I maintained my treatment I would live as long as my peers and I could not pass on the virus: Undetectable = Untransmittable.

About a year ago I trained to be a peer mentor. I firmly believe that peer support should be offered and encouraged for all people living with HIV, especially at point of diagnosis. Working with other positive people, sharing our lived experience and supporting each other is profoundly empowering.

If you are a young person that has been diagnosed then seek out help! Contact your local HIV service and access peer support if it is available. Reach out to someone close to you. You are not alone, you can get through this and become a stronger person because of it.

When I was diagnosed, I thought HIV would tip me over the edge. But living with HIV and facing those challenges head on helped me develop the tools to transform the rest of my life. Three years down the line those dark days seem like they were in another life. I am a proud positive young man, flourishing in a new career. I am happy, healthy and own my HIV.

Testing Positive: Mohammed’s Story

Sunday, November 19th, 2017

People living with HIV

Testing Positive

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

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

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

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

Mohammed’s Story

I would like to start my story by introducing self:

I am Arab Muslim Black HIV+ Gay guy

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

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

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

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

June 2009 my HIV test result came positive.

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

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

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

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

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

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

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

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

I would like to end my story by introducing self:

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

Testing Positive: Juno’s Story

Saturday, November 18th, 2017

People living with HIV

Testing Positive

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

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

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

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

Juno’s Story

I was only tested for HIV because my then partner became incredibly ill and was rushed into hospital. This was many years ago before the life saving drugs we have now. I knew that if he was positive then chances were that I would be.

Having the test and finding out a positive result was no surprise but still it left me numb. It was a different time and I became quite ill, I was also in my first year at university. I remember my overriding feeling was that if I was going to die then I would do so with a degree, that, I thought rather dramatically, could be etched on my tombstone.

It was the early 90s before the introduction of the brilliant, life affirming treatments we now have, I stopped smoking, stopped drugs and at the time drinking and I started to really look at my all-round health. I made changes, started running and exercising and thought about the food I was putting into my body. Back then, before drugs, I did what I could do to stay alive. I understood how precious and bloody wonderful life is.

Twenty-five years later I’m still here, thriving and adoring the simple fact that I’m ageing.

I’m in my fifties and still exploring new horizons. Making those changes back then has enabled me to life a fairly balanced life, I appreciate my health and still do what I can to improve the way I feel through diet and exercise. HIV gave me a bravery that I never had before.

My HIV diagnosis became a positive life-chance, I didn’t know how long I would live for, many back then died. But I made an active choice to grasp life and try to live in the present, I had the support of family and friends but more importantly, for me, I set life goals that were about living, not about a ‘bucket list’ to accomplish before dying. If you get a positive diagnosis, please self care, reach out to those you know you can trust and to others you may meet, get support and then allow your life to go back to its old pace or find a new pace but know that with the brilliant treatments we now have that there is no reason why your life cannot be both long and full of wonder.

Juno Roche
@justjuno1

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!

Maria’s Story

Thursday, December 8th, 2016

Maria's Story

Maria

Could you tell us something about your diagnosis and how it has affected you, especially in relation to dating and relationships?

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?

What needs to change?

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.

Have you ever experienced mental or physical abuse as a consequence of your status?

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?

What else needs to change?

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.

Sue’s Story

Monday, November 7th, 2016

Sue

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.

Cristian’s Story

Sunday, March 27th, 2016

personal-stories-men

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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personal-stories-men

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.