Comment: Ignorance still dominates the public debate on HIV in the UK
Hamish MacKenzie-Sempill writes on World AIDS Day about the ignorance surrounding HIV diagnosis, and on why he thinks it is important to be visible.
Ask yourself honestly how much you know about HIV.
Do it now, and then ask yourself whether some of the stuff you know might seem a little…misguided.
HIV is a taboo subject that people still seem to get uncomfortable discussing, possibly because somewhere in the back of our minds we still have images of the infamous tombstone advertising campaign that shocked viewers in the late 1980s, or maybe it’s because it’s primarily a sexually transmitted infection and society perceives sex as something we shouldn’t talk about.
I was diagnosed as HIV+ in 2006, and I’ve only really recently decided to open up about it, taking a (what some have called) fearless approach to my HIV status, regardless of the ignorance and stigma surrounding the virus. I don’t really have anything to lose from being open about it, and I certainly believe that being transparent about it will lead to more good than bad.
Soon after my own diagnosis, I was directly affected by the stigma surrounding the virus; someone warned my mother against kissing me if I’d been crying in case she became infected, and I was called by a friend saying, “I heard that you’ve contracted Aids”. It was a difficult time, made all the more exhausting because I had to absorb so much important information about my own health, and then relay all of that to concerned family and friends.
There’s a mindset in the UK that seems to be stuck in the 1980s and 1990s when it comes to HIV; people seem to have some outdated fear-mongering campaign flicker into their minds as soon as they hear someone talk about being HIV+.
Ironically the wording for that tombstone advert ended with the phrase “don’t die of ignorance”, which is the exact problem that we’re facing today; it’s the ignorance and blind belief in outrageous myths that make up the stigma that HIV+ people have to deal with on an almost daily basis.
The issue HIV+ people face is that we tend to end up being the ones who have to dispel the myths. So for those of us living with it we come up with ways to soften the blow of our diagnosis when we tell other people; because generally rather than receiving sympathetic, understanding reactions, we’re faced with stupid questions.
Often you’ll hear us say, “It’s just like having diabetes; I have to medicate myself in order to stay healthy.” This comparison tends to do the trick, but when you look at the bigger picture, we’re comparing HIV to an illness that has barely any stigma attached to it, and you’d be hard-pressed to find a person with diabetes say, “Oh, it’s not that serious, having diabetes is kind of like being HIV+”. The two aren’t compared in reverse.
One thing that happens all too often is a misunderstanding in the way that HIV and Aids are thought to be interchangeable terms to describe the virus. For the record: HIV is a (currently) incurable virus that affects 34 million people around the world, and Aids is a syndrome that occurs in HIV+ people following a dramatic relapse in their immune system.
With the current treatment available the term Aids deserves quite a large separation from HIV, given that there are loosely definable criteria as to what actually constitutes an Aids diagnosis. Normally this would be dependent on the CD4 (white blood cell) count in an HIV+ patient’s immune system falling anywhere below a score of 200. People don’t die of Aids, they die of opportunistic infections that take over the body when the immune system cannot cope any more.
The use of terms that incorrectly refer to Aids instead of HIV only leads to more ignorance and stigma, because there’s such a grey area between the two. People use terms like “Aids sufferers” when they mean HIV+ people, which not only sounds crass and outdated, but perpetuates misconceptions.
The reason for this, and I think the reason for the larger focus on educating people about HIV, is that ignorance breeds ignorance, and people don’t feel that they need to know these things.
With World Aids Day at the front of our minds this weekend, it’s probably a good idea to think about what you think you know about HIV and then maybe do some light reading. There’s a wealth of information that comes from a number of brilliant charities and support networks for people living with HIV.
This article was published originally by the IBTimes.
Hamish MacKenzie-Sempill is HIV+, and works as a marketing executive. He is also a columnist for beyondpositive.org and tweets @AGayToRemember.
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