Testing Positive

Testing Positive: Chris’s Story

Friday, November 27th, 2015

People living with HIV

Testing Positive

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

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

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

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

Chris’s Story

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

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

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

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

Testing Positive: Marc’s Story

Thursday, November 26th, 2015

People living with HIV

Testing Positive

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

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

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

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

Marc’s Story

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

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

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

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

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

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

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

Testing Positive: Aicha’s Story

Wednesday, November 25th, 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.

Aicha’s Story

One Sunday, I had severe stomach ache so my cousin took me to the emergency department. They couldn’t find anything wrong with me therefore the doctor just gave me some paracetamol to ease my pain and advised me to go to the GUM clinic. On Monday, I decided to go to the nearest GUM clinic for a full check-up. I used to go to the gynaecologist back home but since I arrived to the UK, I haven’t been and I didn’t know it was free. Once I was in the clinic, I ticked all the boxes (general check-up). Taking an HIV test wasn’t an issue since I had the same boyfriend for 4 years and I tested negative (although I didn’t know the meaning of my result) before starting my relationship with him.

When I got my result, I didn’t know what to think. Everything went blank. I don’t know, I think I was devastated because from that moment, I knew my life will never be the same again. I knew I had to change my life plans and kept my diagnosis from my mother. I shared everything with my mother before HIV but HIV was the only thing I would rather kept for myself. I didn’t want to break her heart and to disappoint her.

I didn’t know anything about HIV and the stigma attached to it, as soon as I left the consulting room, I called my boyfriend. A few weeks later, I rang all the persons I had been with. I didn’t want to blame my boyfriend or to see anyone of us ill. After perfectly doing my duty of saviour, I decided to go on treatment. I didn’t need to go to treatment straightway but that was the only way I could be reassured that I won’t die.

I have always been a positive, confident and resilient person. Knowing that being on treatment is a way forward to a healthy life, meeting others people who were a living proof that I will live and going to support group were the keys to my recovery. The information I was getting from trainings and support groups really change my perception about living with HIV.

The day I was giving a positive HIV diagnosis I thought all my life will be ruled by it, but today I see HIV as a tiny virus I control.

I truly believe that receiving a positive HIV result is devastating but living with it is much easier. It didn’t change my life plans but rather it helped me to rethink about my priorities. I am convinced that it made me a different person. It has unveiled the true me. I am more focused and determined to achieve my goals. Now I know exactly what I can accept or compromise. I am also more aware of my well-being and care much for myself than ever.

Is taking three tablets a day an issue? Not for me especially when I think about people who have to travel miles to get their tablets or who can’t access to their ARVs. I feel blessed and grateful to be HIV positive when things have changed.

Testing Positive: Jim’s Story

Tuesday, November 24th, 2015

People living with HIV

Testing Positive

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

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

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

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

Jim’s Story

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

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

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

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

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

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

Testing Positive: 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.