Personal Stories – Featured

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

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.

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.

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.