Aids Or Advanced Hiv ?

[cumslut-medic]

What do you call it?

I've been told professionally that it is better to say advanced HIV rather than aids. This is because AIDS is no longer considered A syndrome because they know what causes it. Do you still call it AIDS or do you prefer advanced HIV?

[bearbandit]

Advanced HIV disease... I remember in the eighties at an aids/HIV conference, taking my turn manning the Body Positive stall which just happened to be next to the Frontliners stall (Frontliners was a group for people with an arc or aids diagnosis), I remarked to the guy on the Frontliners stall that having different names for what we were beginning to recognise as points on the spectrum of a single disease was confusing and frightening. At the time, a few people recognised the concept of seroconversion illness, then you were "merely" HIV+ until your lymph glands got swollen as part of PGL (persistent generalised lymphadenopathy); then you progress to arc (aids-related complex) before hitting the actual aids diagnosis. A quick note on my spelling habits: I maintain that both arc and aids, once acronyms, have become words in much the same way as radar and laser have become words, hence my refusal to capitalise either of them except when they're the initial word of a sentence.

 

Nowadays, seroconversion illness is more clearly defined, and PGL and arc have pretty much fallen out of use. My late partner was quite happy (insofar as one can be) when told that he had advanced HIV disease, but when another doctor told him that advanced HIV disease meant aids, he fell apart, such is the terror that the word contains.

 

It used to be that an aids diagnosis was a one-way door: once you'd hit the definition, you had aids no matter how well you were on recovery from the aids-defining illness. I got my first aids diagnosis in 1991, recovered, spent the rest of the nineties dropping into the "aids zone" and recovering. I most recently hit the "zone" in 2008. While I was very ill in 2012, and left disabled by that illness, that was caused by a rare rezction to commonly used ARVs: throughout the illness, which nearly did for me, my HIV numbers remained pretty good.

 

The way thinking is going now, I think the damage of hastily applied names in the eighties is showing itself and we need a new way to define HIV disease. Presenting it as a sliding stage which someone can go back and forwards on makes more sense psychologically. Until recently (I'm on a R&R break) I was a volunteer on a web-only service offering peer support to other PwHIV. Newly diagnosed people can cope with being told they're HIV+ much more easily when they're well. People who are diagnosed late often (but not always!) have advanced HIV disease. The latter holds out a hope for recovery in a way the term "aids", with all its eighties baggage, doesn't.

 

Finally the term "aids" is a bit of a nonsense in itself: from day one of infection people show an acquired immune deficiency in that HIV starts out by colonising CD4 cells... Rant over... ;-)