Why isn’t HIV testing normalised yet?

I don’t have HIV, and I don’t pretend to understand the intense emotion and worry that goes along with a long term diagnoses such as HIV, but the lack of HIV testing worries me. Why? I had a health scare recently.

I have bouts of intense exhaustion. It’s all a bit strange as I’m a pretty active, otherwise health, 25 year old. My doctor ran a few tests including  a blood test. My blood count came back, for lack of a better word, hinky. Something wasn’t right. My platelet count was off by quite a bit. For those of you (like me) who aren’t sure what these important little things are here is what I managed to find out:  Platelets, also called thrombocytes, are a component of blood whose function is to stop bleeding by clumping and clotting blood vessel injuries. Thank you Wikipedia. I also checked NHS direct for those of you who will be poo pooing my google search. I had several blood test and these levels either dropped for stayed abnormally low.

I was worried a lot; I had just flippantly mentioned how tiered I was. Like I have with other doctors visits. I hadn’t expected anything to turn up. I probably wouldn’t have said anything but I had recently swapped doctors from my local GP practice. I had been with them for a long time and I swapped to the med centre after I had gotten married and moved. The doctor had just asked how I was getting on. I had explained “shattered, but I always am 2 or 3 times a month”. She kindly offered to run some tests. now this platelet thing got me worried so I started to google the possible causes. NEVER DO THIS!! I was waking up in a hot sweat very worried. At times convinced I might be in trouble.

4 blood tests later they sent my results to a haematologist. When the expert replied they suggested a whole host of test; including identifying my HIV status. This was along with many things such as thyroid and Hep c. When the doctor read out the letter I almost cried! I felt silly but HIV is a scary concept. I was sent off to the nurse straight away for the test. He could tell I was a little unsure what was happening and kindly explained they where testing for these things more often now. He had also said these things where unlikely he explained kindly that I was low risk.

I felt weirdly ashamed that I was being tested. I even folded over that bit of paper that tells the nurse what bloods they are taking so no one could see. I cried to when I got home. I was scared and felt unable to talk to anyone. After all it’s not routine to check for HIV. I’ve been to hospital a few time for various reasons and never was it suggested they check for HIV. My husband held my hand. Cuddled me and said something most amazing “what ever it is we deal with it. You and me.”. I’m lucky. Not everyone gets that kind of support. I was too scared to tell people till after I got the all clear; people might get the wrong idea.

Why is HIV so scary? most people can possibly guess. HIV is a virus that has no known cure. It attacks the immune system. A life long condition it weakens a persons ability to fight infections and disease.  Despite the lack of a cure there are methods of controlling HIV. Effective antiretroviral therapy drugs makes the virus undetectable in blood tests and significantly reduce the risk of passing on HIV to sexual partners. Due to these drug breakthroughs it is rare for a pregnant woman living with HIV to transmit it to their babies, provided they receive antiretroviral therapy and medical care early on.

The stigma around HIV is probably largely down to its method of transmission. It’s most commonly caught by having sex without a condom. But can be caught by sharing needles. As I have never been a drug user and have had few sexual partners I was told the likely hood of contractions was very, very low. The thing that worried me the most? I had had sexual health screening. Not once was it suggested that I be tested for HIV. Not once. Despite the unlikely hood of me having HIV a little bit of research told me 1 in every 620 people are HIV positive. 17% of those with HIV don’t know it. Although extremely unlikely I could have been one of those people. An even more worryingly I have been with my husband a long time so he could now be one of those people too. and that broke my heart. Thankfully HIV can be controlled monitored and reduced to “safe levels” so it can’t be transmitted easily. There are people who could benefit from these medical breakthroughs but they don’t even know it.

My doctor reassured me that testing was more and more common, due to the large figure of undiagnosed people, the nurse said the same ting and so did the doctor I collected my results from. He explained testing was pretty straight forwards. I frowned at this. If testing is straight forward why don’t we do it more often? Why is there still a stigma attached to it? I would tell someone if I was being tested for diabetes or even something contagious but maybe not HIV. In fact I didn’t tell anyone other than my best friend and husband.

HIV treatment in the UK saves and transforms lives 88,769 people (including 315 children aged under 15) received HIV specialist care in the UK in 2015. The number of people accessing this care has grown in recent years. 2006 to 2015, there had been a 73% increase in people accessing HIV care. This is a good this as more and more people who are HIV positive are being identified and given the best possible treatment.

HIV is still a scary thing. One third of people living with HIV in the UK have experienced some form of direct or indirect discrimination. shamefully half of these instances involved healthcare workers. HIV testing needs to be seen as normal. As one of those health checks you undergo when they feel things are serious enough to take bloods. No one should feel ashamed of a blood test.

I was, I suppose, lucky. As it turns out I have a B12 deficiency and my platelet as well as white blood cell count are naturally lower than everyone else’s. But what if I hadn’t been lucky and I had gone through the rest of my life not want to talk about what I had been through. Not feeling safe enough to explain a diagnosis? I can’t imagine what its like being afraid that people find out about an illness. Not only should HIV become more commonly tested for, but those living with HIV should be treated with a little more respect and a little less stigma and judgment.




6 thoughts on “Why isn’t HIV testing normalised yet?

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      1. No problem – I have a good friend who has no idea how many years she was HIV positive before finally being tested – all she knew was that she was really sick and no doctor could find a solution. Often, something as simple as an HIV test can save a woman’s life. Women are excluded from HIV testing in 1st world countries because our governments are convinced that HIV is a gay men’s issue…even though in 3rd world countries it is an indiscriminate killer of everybody. I appreciate you writing about this.


      2. I was really shocked about the lack of testing. Especially as early diagnosis can save not only the persons life but their quality of life. All the best to your friend.


    1. It should be a test regularly carried out by the NHS in GP surgery. An easy blood test; could save lives. Most people wouldn’t think about HIV and will be tested for various things before undergoing a HIV test. We need to tackle the stigma attached to being tested and to being diagnosed.


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