Personal Stories of living with HIV

Personal stories of people living with HIV.

Testing Positive: Jill’s Story

Monday, November 23rd, 2015

Women 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.

Jill’s Story

I was tested for HIV as part of routine antenatal blood tests during my first trimester of pregnancy in September 2011.

When I got the result I felt confused, my husband had told me he was negative and I had no reason to think otherwise. I felt fear, not initially for myself, but for my unborn child. I felt anger and also a sense of grief. I thought why me?

I contacted Positively UK the day after I was diagnosed as I wanted to speak to another woman who was positive and if possible someone who had gone through a pregnancy with HIV. I also got in touch with my local HIV support charity, though this wasn’t something that I really embraced as I didn’t feel connected. I cried, and I asked my husband a lot of questions.

I also just carried on with my life.

I’m a researcher who already had a solid understanding about HIV, and this knowledge helped get me through. My friends and my family really helped me too, but I mainly coped with my strength of character and a ‘fuck you’ attitude.

When I was first diagnosed, even with my knowledge base, I was devastated and since then I’d be lying if I didn’t say that there had numerous ups and downs. However, to cut a long story short, here and now in November 2015, I’m doing great, actually amazing. I’ve an undetectable viral load, and that for me feels like I’ve won the lottery, not that I’ve ever won the lottery, but you get what I mean. My daughter was born healthy.

I’ve moved on from my husband because he wasn’t supportive of my needs. I’m now in a relationship with someone who is negative. Go figure. Instead of being outside looking in on the HIV community I’m now actively involved and have recently been appointed to the board of trustees for the Terrance Higgins Trust. Basically I’ve embraced my status and I intend to live a long and productive life and do everything that I can to educated and support not only people who are living with HIV, but also the general public.

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.

Testing Positive: Helen’s Story

Saturday, November 21st, 2015

Women 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.

Helen’s Story

My name is Helen, African Woman, Christian and church goer. I was tested in 2001. I had had health problems with my left foot bones not HIV related at all. Among the numerous tests done the Doctor included an HIV Test without asking me. To me it was my luckiest day because had I been asked to test I would have said NO NEED, I am not in any “Risky Category”. Yet on getting my results it was a late diagnosis.

Had it not been that doctor I would be among the many who are living with HIV and yet unaware. Or I would be dead from some disease that is manageable.

Testing saved my life and gave me a change to live longer. I am able to contribute to the development of society as a health working citizen, as a friend, a daughter, a sibling and above all as a mother.

When I got the result I felt lucky, overwhelmed, and full of anxiety about the future. Lucky because I had got a diagnosis and was to begin treatment which would give me a healthier life and a chance to see my son grow. Overwhelmed, how could it be me, for what reason would I be HIV+ when I was never at risk of any of the transmission ways known to me at that time! I was infected through the numerous foot operations I had had way back in Africa. Anxiety about the future: about how long shall I live, how will I take care of my child and where will I leave him. Will I be strong to work, shall I maintain my job. How about relationships, will I ever get into a relationship…???

Everyone reacts differently. I told my trusted friend who is a Medical doctor and she straight away addressed my anxiety: “Helen, with treatment the virus will be managed, you will have a normal life like any other person. See your child grow.”

First I took my medication as told never missed a dose and took it around the same time till now. I told every friend of mine and my family with time and selectively, so I told my parents 9 years later.

I am a spiritual person, I thanked God that I was detected to be able to get on treatment rather than dying of something that can be managed. I have kept my faith for strength and trust in the new developments around treatment.

When I told my friends and family, I had no fear and worry of judgement, stigma and discrimination. These important people in my life lived up to my expectations. Their understanding and un-judgemental ways towards me has continued to give me strength to push on with life.

For someone diagnosed late and being told that I was undetectable after being on treatment has kept me going and feeling blessed. The motivation to keep healthy and see my child grow and be independent keeps me going. Being able to complete graduate school, remain employed and being supportive to other people living with HIV through sharing experiences also keeps me going.

In the early days and years of diagnosis, I worried a lot about tomorrow if I shall be there. I worried about people knowing about my HIV status, and feared getting into an intimate relationship.
Today my life’s plan is of when I am 99 since in my family people do get to that age plus. I am talking about grandchildren despite my son being young and still in school. I am open to dating when the opportunity avails itself. I live openly about my status, I have appeared on television, in magazines and talked to communities, universities and colleges.

At diagnosis every thought and dream was about HIV and me living with it. Today it takes me sharing an experiences through peer support to think about HIV and it is never in a burdensome, worrying or stressful way.

Bea’s Story

Thursday, September 19th, 2013

Women living with HIV

Bea

Can I have my children tested?’ I managed to mumble those words. The doctor had just given me my HIV test results; I was positive. My mind was racing, pictures of the ‘thinning’ bodies I saw back home in Uganda were flashing in my head, the pictures of death were too vivid! I stared blankly into space, holding on tightly to my children. Grateful that at least I was a mother, my concern now was with their health; surely, they must be positive! I could not imagine that it was possible to have healthy children after a positive diagnosis. I could hear the doctor talking, ‘there is no point in getting your children tested now because they are not yet five years old’. I did not shed a tear; in shock, I left the hospital and headed home like a zombie to break the news to my husband. He was my only source of support at the time. The stigma was very high in my community and since I did not have any physical symptoms, I did not tell anyone outside the medical team; it became the big secret in my life.

All this happened at Mayday Hospital. I was not given any pre-test counselling and I had to wait two weeks to see a counsellor even after diagnosis! There was no specialist HIV clinic, and I used to see a consultant in the chest clinic. Appointments were characterised by a long wait since there were no specific, allocated times, and a ten-minute session with the consultant, if you were lucky. Just as well, because all he ever did was let me know my CD4 count, then send me off for more blood tests; the dreaded lab forms with a big red sign in the middle and the words ‘highly infectious’. I remember sneaking around the hospital corridors with my form folded until I got to the blood test department where you could see the nurses’ discomfort from their body language; or was I projecting my own fear and discomfort onto others? I remember vividly that with every appointment my CD4 was dwindling and with it my life. I didn’t understand how it worked, but the steady drop, was an indication I was facing imminent death.

Close to breaking point, I was saved by the National AIDS Helpline service who directed me to the ACE project. The organisation has since closed down, but the wonderful people I met there were my salvation. This was my first opportunity to meet other people like me, HIV positive. The majority were gay men, one of whom in particular inspired me to carry on, and who had been positive for 14 years. Even though my GP had given me leaflets about Positively UK, I didn’t have the courage to contact them; besides at the time they were located in Sebastian Street which seemed so far away from Croydon, especially with two young children. Little did I know that at the time there was travel assistance!

My life changed dramatically the day I finally braved the doors of Positively UK. I can’t believe it’s almost 15 years since my diagnosis! A lot has changed, more complacency, increased diagnoses, treatment options, but the stigma remains.

I believe behind every cloud is a silver lining. Today I can say that my diagnosis was a blessing in disguise because it gave me the opportunity to understand the value of life and to search for my true self. I couldn’t agree more with Rhonda Britten in Fearless Leaving: ‘Adversity has the effect of eliciting talents that would otherwise have lain dormant.’ The struggle continues, but I now know there is more to me than the HIV.

Jane’s Story

Thursday, September 19th, 2013

Women living with HIV

Jane

I was 24. I was living in NY, was enrolled in film school, and had undertaken the first half of my film degree. I had been living there for five years, spent the first three married to an architect, and when our marriage floundered had found myself young, free and single in the Big Apple. HIV had dealt New York a harsh kick in the teeth, many of my friends were gay and I felt more aware than most of the threat of transmission and the realities of the virus. I remembered the campaign back home with John Hurt, the falling sickles and lilies on tombstones. I had been sixteen when those ‘infomercials’ were aired and I remember the rainy day when the flier came pushing through our letterbox at home. I had taken mine to school and it had been hotly debated in the girls’ loo. Suffice to say we breathed a collective sigh of relief when we felt that we had nothing to fear, after all, things like that didn’t happen to nice middle class white girls like us… Did they? I had always practised safe sex, had taken a test in NY when I got my green card and been monogamous in relationships.

That morning, I received a call from the doctor’s surgery at work, ‘odd’ I thought and called my boyfriend. We had been together almost 18 months by then, living together a year. It was he who had suggested I stop working. He told me he’d support me through my last two years at film school. For our future, he had said. We were serious. ‘It’ll be a routine test result, they want to talk stuff through with you before they change your health insurance policy.’ I remember him saying, ‘Baby, don’t worry!’ I still took my best friend with me. When the young doctor finally sat me down, he explained exactly which test had come back positive. He told me I may live ten years, not to have children, that there was no cure or medication and suggested I get support from a place called Gay Men’s Health Crisis. The shock was enormous. There were tears. I went terribly quiet and immediately retreated, withdrawing into a world that took me nearly five years to return from. Sometimes I feel as though I still exist there, even after all this time. A place that is lonely, shameful, and damaged, where my own body is my enemy and the person I blame is myself. I didn’t blame my partner for keeping quiet about his drug use. I understood that he thought I would never have looked twice at him if he’d divulged that side of his past. I believed he had not known he was positive and therefore had not knowingly taken chances with my health.

Despite that, we broke up and for the next few years, I embarked on a mission to live without future. I quit school, buried myself in work, career and the pursuit of money. I rented a summerhouse upstate, travelled extensively, bought a car and partied in the most expensive shoes God ever created, learnt how to scuba dive, ride a motorbike and jumped out of planes. I counted down the years before dying and worked through my own personal checklist of what I thought I should do before I went.

When I finally stopped to draw breath, I realised I was miserable, bruised and angry. It wasn’t working, this living in the moment malarkey. I decided to come home. I returned to London in 1996 like a person who had been chewed up and spat out. I avoided boys rather than let them reject me until I met someone who was different. When we found out I was pregnant I finally sat with my HIV diagnosis and faced it square. It was the most terrifying time of my life. I had to try and believe in the possibility of my own future once more, to begin to live with the fear rather than run from it. I faced the disease as best as I could and found the London Lighthouse and Positively UK who helped me meet others and put me on the track I have never looked back from. Finally, the meds came and I started them during my pregnancy, my father disowned me but others stepped up where he’d fallen away. My son gave me strength, my second gave me hope and together my little family have given me back the courage and the reason to stand back up, breathe and keep on walking forward.

Mem’s Story

Thursday, September 19th, 2013

mem's personal story of living with HIV

Mem

I still remember the very cold January morning; I was not listening to the pre-counselling, I thought it did not concern me. I just wanted to get the test done and over with… Then came the shock! My life changed in a matter of seconds.

I had arrived from Zimbabwe on 20th December to attend my paternal aunt’s wedding the following day. The wedding went very well, it even snowed! Christmas followed and the celebrations seemed endless. I started feeling unwell after Christmas, thought it was all the hectic celebrations and weather and maybe I still had jetlag. I tried a few over-the-counter remedies for colds and flu but did not get any better. My aunt, a retired nurse, advised me to go for an HIV test, just in case… It was then that I had gone to St Ann’s with a cousin and my friend. I had been working for 16 years for a Southern Africa regional NGO, as an IT Manager. I had an annual bonus of US$2,000, to spend outside the country, so I got a ticket plus spending money, and came for four weeks – for the wedding and those fabulous January sales! I had visited the UK on several occasions in the past on holiday and work.

I worried, and the word DEATH featured in my thoughts all the time. I could see myself as one of those people in the media adverts of Africans dying of AIDS – just skin and bones, I was frightened. I had unfinished business back home. I changed my return ticket several times hoping that I would still be able to go home. My annual leave was running out, I asked my boss for a month’s extension, citing a kidney infection that would soon go away. My son, 15, was going back to boarding school – fortunately my employer paid for my son’s fees as part of my contract and I had left my parents in charge of my son. But there was also my rent, property and other bills, car, etc…

I asked the consultant if I could get enough drugs so I could go back home to resign from my job properly, before coming back to continue with treatment (I had to make sure I collected my pension and tied up all loose ends, but was told this was not possible.

I had a 65K viral load and CD4 was below 10, I had to start ART immediately. I read the enclosed medication leaflets and could not believe I was actually on treatment for HIV! After two weeks on treatment, I started having terrible side effects and other infections kicked in. They suspected I had TB, so while I was waiting for the test results, I was started on TB treatment. Three months later it turned out that I did not have TB after all, but at the stage I was taking up to 18 tablets a day. I could not eat and lost a lot of weight. I was admitted to hospital for two weeks with high fever and was very anaemic. A scan detected malfunctioning liver and abnormal kidneys – polycystic kidneys are hereditary in my family.

During this time, worry and I became good friends; worry brought along stress, anxiety, fear and depression to keep me company. I then came to PW with a cousin to attend the support group. It was a life changing experience, and my life took a turn for the better!

My visa was expiring in June; I had a solicitor and sent in my application for leave to remain on compassionate grounds. I then applied to join the Positively UK volunteer training in October; I was depressed most of the time but realised I had to do something with my life in order to move on. I am still a volunteer and was nominated Volunteer of the Year by the Third Sector magazine.

So, five years down the line, I wonder when I will ever see my only child; my immigration is still unresolved, I cannot be gainfully employed and I cannot travel outside the UK. I have however made great friends through HIV and I get a lot of inspiration from them. I still have a lot to smile about!

Macey’s Story

Thursday, September 19th, 2013

Women living with HIV

Macey

My official diagnosis was in 1989. I then took another test in 1990 in the UK to confirm the legitimacy of it. At first, I felt disbelief that I was infected. I thought, ‘how could I have been so stupid?’ In a way, I was expecting it because between late 1987 and 1988 I was involved with someone who was using drugs regularly. By the time he had come clean about it, we had been together almost a year. I asked him to have a test with me but he refused! After a few attempts to help him to come off the drugs, and a few incidents with the police, I had had it with him and ended the relationship.

I met my husband in 1989 and in the early 1990s I lived in a small town in Somerset where the centres of the community were the post office and the local pub. The first six months living in the middle of nowhere were tough. I didn’t know anyone except my mother-in-law, so I was extremely emotionally and socially isolated. For almost four years, we led a life in what was supposed to be normal British society: as a wife and a husband who both worked and went to the pub quiz at weekends.

I found it hard to cope with HIV; I attempted suicide on more than a few occasions because I really thought there was no hope for me. My husband encouraged me not give up and to try to stay positive, he took me to see a clinician at a GUM clinic in Bath but they knew nothing about how I should deal with the issue. All they said was that as long I was happy and not stressed out, then the virus would not attack my immune system, which was not helpful. There was no one I could talk to or ask questions about simple things.

My marriage was an abusive one; I remember after one fight in particular when he had tried to strangle me, the neighbours called the police and they took me to the hospital. After almost three years the level of abuse was too much and I become homeless. The women’s refuge sounded scary to me at the time and I had no idea what it was so I refused their help. Instead, I knocked on the door of an acquaintance and I stayed with her. It was the first time I felt comfortable enough to tell to someone about my positive status, it was tough to disclose but a relief. One of her friends found out about a support group for positive people. The nearest centre at the time was in Bristol, which was about a good hour’s drive from where I lived. When I got there the first positive woman I spoke to gave me a hug and I burst into tears; I couldn’t stop myself! I had hated myself and had almost given up hope. I just couldn’t see the point of living, until I received counselling from an HIV organisation. I tried to attend the support group that ran once or twice a month but I only really started attending regularly when I moved to Bristol in early 1995.

The hardest thing has been dealing with loss. From mid-1990 onwards, I met so many wonderful people and I lost so many great friends. I used to go to a funeral every month, and more often than not, twice a month. By 1997, I decided to stop attending them because I simply couldn’t cope and I was numbed by it. I have moved around a lot, to different cities, including London, partly because of an abusive relationship but mainly to be closer to support. Disclosure is more or less impossible, especially in small towns, and when it comes to meeting people with whom there is the possibility of an intimate relationship, I usually disclose my status before I am involved. I have come across many people who avoid telling their sexual partners for fear of rejection. I can understand them completely because I know that prejudice is enormous and people are so ignorant. Nowadays, HIV is not a death sentence but the stigma and prejudice continue. I believe that we are more isolated then ever because we are expected to pop some pills and be just like any other human being. We see fewer and fewer support groups these days; if this was a symptom of people managing independently, it would be a good thing, but I don’t think so. I feel, as we are all human, we need people around us to share our worries with from time-to-time.

Julie’s Story

Thursday, September 19th, 2013

Julie's personal story of living with HIV

Julie

I was 24, in my final year at college and was planning to go to university when I was diagnosed HIV positive in a small town in Yorkshire. I had been for the test having had a sero-conversion illness some months earlier. I received pre-test counselling for about an hour and the counsellor went through some of the issues and made an appointment for me to come back in two weeks’ time.

Three days later I received a letter from the clinic that just about made me choke on my cornflakes. It was a Friday and the letter said that I must attend the clinic first thing on Monday morning as a matter of urgency. I knew that this was not an invite to discuss the weather or the price of fish. I remember looking at my mother sat in the chair and I wondered how much older it would make her if I told her but tried to contain myself and look normal.

On my way to college I ran down a hilly field near my parents’ house screaming loudly and crying. I remember standing at the bottom of the hill looking at the letter and telling myself that it meant nothing, that I was no different today than I had been the day before, the week before, the year before. I was still me. I told myself that I was a big strong woman and this is a tiny little virus. Trying to get the results that day only confirmed my fears. The counsellor told me she could not give the results over the phone and that I had to see the consultant on the Monday. Somehow the world around me looked different, like seeing through different eyes. I knew that nothing would ever be the same again.

I took all eight of my friends from college with me and they paced the waiting room whilst I went in to see the consultant. The consultant confirmed what I already knew and though I was offered post-test counselling it seemed a bit pointless as I had been thinking over the weekend about what the diagnosis meant. I was glad it was me and not one of my college friends. I thought I was better equipped to deal with it. There was something about having a battle on my hands that excited me. It was like I had a quest.

I was the first person to be diagnosed at the clinic, but was soon joined by Eric who introduced me to a world of wonderful gay men. My openness about my status, large bosoms, vulgar humour and acid tongue made me very popular and as there were very few services for women outside London, they became my support network.

Telling my parents was awful and though my mum never flinched at the news just saying ‘never mind love, just live life as healthy as possible’, my dad was visibly heartbroken that his baby might die before him. It felt like I had really let them down but I know that they are intensely proud now.

I finished college in the September and went off to university to do a degree in Peace Studies. By this time I was also doing talks raising awareness in schools, with social workers, healthcare workers and conferences with the National AIDS Trust. Over the years HIV has (and continues to) throw up many challenges, but it’s also brought friends and a life that is full-to-brimming with laughs and love.

Kelli’s Story

Wednesday, September 18th, 2013

Kelli

Born in Kampala, Uganda in 1989, I was a great shock to my mother and my family members. Mum had been so excited about having her second child [me] but was taken by surprise when the doctors had told her that I had pneumonia and was HIV positive.

I was disclosed to at the age of 12 and it completely threw me off. I instantly believed that that was it for me; I was going to die! I had no real knowledge about HIV (I mean, it’s never really taught in schools is it?) and thought I was extremely ill and had no chance in living (it seems silly now, looking back on it). My doctors explained it to me over and over again, however, I chose to block out all of the positive facts they were telling me and was stuck in ‘’doom’’ mode. I took this as a learning curb, and decided to research more, gain knowledge and figure out what this ‘thing’ is.

Over the years I was asked if I wanted to join support groups with other kids my age going through the same things I may be going through. And every time I was asked, I refused! I wanted to do it on my own; I didn’t want anyone to be let in. I acted like I was strong enough to deal with the whole world and all its problems. I was coping well with my treatment and had no major concerns about my health. So I said ‘’NO’’ Until I was blue in the face. I thought I’d be judged. And to be completely honest… I was scared! The stigma that surrounds HIV can be daunting, unbearable and harsh. Then I was introduced to CHIVA (Children’s HIV Association) where I met the most AMAZING and lifelong friends a person could ask for, I was taught so many different skills, gained new and exciting knowledge on living with HIV and was able to find myself. I finally realised that I am NOT the only one who a puts on a hard exterior and holds things in (due to fear). The stigma I thought I would face by meeting other people quickly turned into love, support and understanding from my peers. I was able to off load, I was able to advise, I was able to share and explore the many wonders of life in the eyes of a HIV positive young person. I went on to holding summer camps and speaking at world-wide conferences for other young people who were in the exact same position as me. Children who were full of fear, doubt and confusion. They looked up to me and wondered where I got my strength, courage and knowledge from? It all drew from the help and support of my peers, Doctors and family members. I realised that when I was strong, they stayed strong. And it got me through. I began working for Positively UK where I began my peer support work for young people also living with HIV. And I can proudly say that my CD4 count is over 350 and I have remained with an undetectable viral load!

I’d be lying if I said I don’t have my off days, sad hours and scary moments. However I have learnt to embrace my status, and make a difference in the lives of young people like myself who may have a few more off days, sad hours and scary moments than I do.

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.

Ange’s Story

Thursday, August 15th, 2013

Women living with HIV

Ange

Have you looked in the mirror?’ the GP asked me. I thought he must be a bit mad! I had only just managed to drag myself from a bed I’d been lying in for days, too sick to move. Where would I even have found the strength, let alone time, to look at myself in the mirror?!

As it turns out I looked quite yellow and he suspected I might have hepatitis. He asked me to go for a blood test at the hospital. This was when I was a final year student at Manchester University. I never went back for my results as I was doing my exams, felt better and moved back to London. My medical records were transferred to a new GP who in turn called me to the surgery, confirmed that I had had Hepatitis B and suggested I go for a test to ensure that things were ok, and then suggested I go for a second to make doubly sure that all was well. I did as I was told. Weeks later, he called me back to the surgery. I remember I went with my little sister and when I was called in, I took her with me but he said I should go in alone.

I thought nothing of it. As soon as I sat down, he told me that I should go for an HIV test. I think the blood must have drained from my face because he said, ‘you look very pale.’ What did he expect? He had just told me to go for an HIV test, no information, no discussion! I sat there in silence while he wrote on the piece of paper that I was to take with me to Whipps Cross Hospital instructing them to do a blood test for HIV. I remember looking at it and seeing the word HIV written on it. I took it, picked up my little sister from the reception, and walked home.

I hid the piece of paper under my bed and went to the local library to look up hepatitis. I never went for the test. After a couple of weeks (in those days it took about that time for the results to come back), the GP wrote to me. I remember the letter said something along the lines of, ‘I strongly suggest you go for an HIV test’, with the ‘strongly’ underlined in red. I got so scared, I took myself off to the hospital the next day. It was not an easy day. After two weeks, the GP rang me and asked me to go to the surgery. I never went back. So I never really found out my results from him. However, from then on, every time I read a newspaper or watched TV there always seemed to be something about HIV, as if reinforcing the message that I must be positive. I lived with uncertainty for about six months, then I thought I’d be better off finding out for certain. I went to a local hospital where they did pre and post-test counselling. This time I am glad to say that I went for the test and I was much better prepared.

Around the same time, my brother had just disclosed his HIV status. He was quite unwell and spent long periods in and out of hospital. He must have had every opportunistic infection going. He had Kaposi’s sarcoma, meningitis, fits and TB. He sadly passed away a year later in 1994 from PCP before I had a chance to disclose my status to him.

It was a difficult time for me, though one of the first things that gave me the strength to carry on was the fact that I got confirmation of my diagnosis in the same week that I got the offer of a job as an information officer for one of the then Regional Health Authorities. I decided I might as well take the job and keep myself busy while I waited to die. I think it was one of the best decisions of my life. Since then, work has been a great source of strength for me. I also decided quite early on that I had to find a way to cope with my diagnosis. Either I could choose to be bitter and twisted and blame whoever infected me, or I could make the most of whatever life I had left. I chose the latter and to this day, I appreciate each day that I am alive. I do what pleases me, within limits of course, and make absolutely no apologies for it!