Sunday, 5 September 2010

HIV/AIDS Denialists

Yes these very strange/odd - to me at least! -   people do exist! And I have come across them recently in person and online.

It has been quite a journey to meet and talk with them and to learn what they believe. At times a very upsetting journey!

I have also found that many, with and without HIV, do not know that these people exist or how prevalent they are - or in many ways how influential! And this in my opinion is so VERY dangerous!

Denialists are those that either deny HIV and AIDS exists at all, and that it is not a virus.
Some believe that if it does exist  it is entirely caused by your lifestyle i.e what you eat, being overweight, pollution, using drugs, both recreational or  that you take medications for illnesses and not just use 'natural ' medications or your sexual practices - anal sex is often cited for a reason for HIV/AIDs.

  • As a side issue - I know this is not relevant but this is my blog so I will say what I like - I have no objection AT ALL to anyone having any sort of sex they like, including anal sex, men or women. If someone enjoys it I have no objection to anyone doing whatever they want sexually as long as they are safe and it is by mutual consent. And many do like it anal sex and other sex i.e domination, dressing up, whatever??- I am happy for anyone to do whatever they like.
  • ( yet if they ever read this AIDs denialists will cite this as a reason why I have HIV won't they ?! As I am somehow immoral and so deserve to have HIV as even though I have always have had pretty ordinary sex. But to some denialists  it is enough that I think its OK for those who like it! So that explains why I now have HIV!
    Often when I talk to HIV?AIDs denialists my attitudes and opinions are enough of a reason  in itself as to why I now  have HIV/AIDS??
  • But I personally want it known I  have never had anal sex as tried it once or twice and got no where with it EVER, not even to first base, so did not happen.
  • Why did I put this very personal detail in? Too much information?? Well I did because I have been accused/told too many times recently by HIV?AIDS denialists that the reason I and my husband have HIV, and that he has had AIDs is because I/we must have preformed certain sexual practices - I assure you that apart from us being open and trying a few things between ourselves  - but not always succeeding -  our sexual life is and always has been very straight forward hetero pretty ordinary sex

But if you tell them ( HIV/AIDs Denialists that you have none of these factors in your life - including bad diet, pollution, certain lifestyle choices, drug taking, anal or any other kind of sex they seem to disapprove of their view! .......... they just go on to find other reasons why you may now be ill and a cause to why you now have HIV!! 

To many HIV/AIDs denilaists even if they think HIV exists  it is never just HIV as a virus that leads to AIDs. A virus that is what you were unfortunate to catch/acquire and that you now have ! Whatever you say they always have another explanation .

So crazy really!

Still other denialists do believe the HIV virus exists but at most is exists as a harmless 'carrier' virus. That if you get AIDs if your HIV is untreated then it is due to other factor ( see above)
Many also refuse to believe that even if HIV exists, that it is a sexually transmitted illness/virus

Still others believe in the HIV virus but that it is the toxic HIV medications that cause people to develop AIDs not your HIV!!
This really does make me sooo MAD!
Oh fucking tell Freddy Mercury this or tell the thousands of others who have died world wide before effective HIV/AIDS medications existed? And those who are still dying nowbecause they can not get the meds that keep us alive and well.
Also tell many otherswo survived thanks to the meds,  including friends I have met who have had HIV for many years and famous ones such as Magic Johnston: who has survived  HIV for many years due to the HIV drugs .
Or DAB Dab Garner: one of the first Americans to be diagnosed HIV positive and as he managed to survive until HIV meds were availale - unlike many he is still here thanks to surviving long enough to get effective  HIV meds and to tell his tale and is still  working hard to prevent others getting HIV- there are so many anectotal stories.

But I accept these are not evidence, I leave evidence to the scientists and so should HIV /AIDs denilaists. They present themselves as if they know and that they are scientifically & medically able - but they are no more that than I am?
At least I KNOW I am not medically trained or a scientist, these people seem to think they are.

But in my opinion , the fact is HIV AIDs denialists are so wrong and there is much scientific evidence to support this  too - but this is my blog and I am not a scientist, I just have HIV.

Some HIV/AIDs denialists even believe that those like me who take HIV ARVs - Antiretrovirals  - are addicts - that the ARVs are addictive and simular to taking Heroin! 
That if those taking them stopped taking the ARVs they may get worse for a while but that this is drug withdrawal and eventually, once they are no longer addicted, they will be again well without the use of ARV meds!

This is VERY dangerous as people with HIV who have reached the point of needing meds - like me and Barry - will die if they do not take them. and sadly the past is littered with HIV denialists that in fact died of AIDs but did not believe they had HIV/AIDs even on their death bed!! see...........
  •  and

Denialists are rarely taken seriously by doctors medical people in the west, US, UK, Europe etc.

BUT sadly they are at times taken seriously by qualified doctors in places - for instance Uganda right now -  where to believe in the existence of HIV and AIDs is currently against government policy and to do so is going against the government that probably employs them. So will not further their career, or worse may put them in danger to believe in HIV as a virus leading to AIDs that the only treatment is ARVs- yes this happens even to medical professionals in some countries even now - South Africa has completey changed now btu only a few years ago this was the position there too!!

But also denialists are often believed by ordinary people many of whom have been diagnosed HIV positive. 

There are many reasons for that, and for those it starts as denial - which is for many - including my husband briefly-  but not ever for me - is a first response to an HIV diagnosis.

Therefore denialist claims can be so really attractive when you have been diagnosed with HIV yourself and are in denial and  shit scared and also have no idea how or if or how you can tell your family etc. 

But denialists claims are also often also believed by those who have also had time to think about their diagnosis as they are very desperate and  looking for any other answer rather than face the realities of being HIV positive i.e  facing a lifetimes of medication and often stigma and discrimination.

( or if you can not get that medication as many still can not, very possibly AIDs and an early death and the stigma on top!)

And so who can blame them for wanting an alternative? I don't! As I have found to my cost that to embrace that you have HIV, not ever deny and to be open is a VERY hard path indeed!

I have found sadly that hetero women with HIV I have met in person and online can be likely to believe or half believe denialists claims and those that are Christian women or very devote in whatever religion they follow are more likely to believe denialists claims - especially the claims that say/believe it is not a sexually transmitted, illness. 
It is so easy sadly to see why they want/indeed need to believe this! 

Others that readily believe denialists claims I have found to be those who can not afford effective HIV medication.
Usually/often because of the health system in the countries they live is one where they have to pay for their medical consultations, treatment and drugs directly or to pay for it need have medical insurance that they have to pay for. And of course can not pay direclty for treatment  and not all have insurance - and one thing I have learned is that a HIV diagnoses can restrict your ability to work and earn an income even if you are not as yet unwell!!!

- and this, surprisingly to me, includes America as well as countries in Africa and many other countries where HIV meds have to be paid for even if you are actually dying for AIDs. And if you do not have the money to pay for them, you can not get them!

This for me from my privilaged situation in the United Kingdom, where my HIV meds are totally free to me the sadist situation I feel.

I can so see why those in this situation want to believe the denialists claims? What real option do you have to stay as positive about your life as you can using any means that you can when you do not have access to the only medication that will save your life?

 Especially if the denialists  are offering 'alternative' 'cures' or 'treatment' that some may be able to afford. And many denialists combine their obsession of converting people to their cause with selling 'alternative' or 'natural ' 'treatments'.

To be fair not all denialists are selling their 'alternatives' or are trying to get people to use them or follow their regimes for financial gain.

  • I have met many Denialists that really believe they have the best interests of those with HIV at heart. Many that 'encourage' those diagnosed with HIV to use various natural or herbal medicines.
  • And in fact many set up projects that often give their natural remedies out for free to those with HIV/AIDs and truly believe they work! 
  • Also those who propound lifestyle changes, like living in an 'unpolluted' situation,  not eating meat, even being vegan etc, etc .I could go on - they seem to mean well, but are so VERY dangerous!!

Rather than repeat all I have written in other arenas on the internet and all the links posted for further informaton.
I intend to post dialogues with others I have had elsewhere about and with HIV/AIDs denialists - I just have to check with those I have spoken too about this in other arenas, that they do not mind me quoting them?


jtdeshong said...

Don't let those people bother you who say you got this from sex act! You're right when you say the deniers like to blame the victim. AIDS Deniers are also bigotted, homophobic, racist and misogynistic!

They also misquote and misrepresent the science of HIV all the time. Many times it is just out of ignorance, but often it is even intentional.

For some reason they feel this is a game and they are trying to be "the winner". But it is not a game and some must have a mental pathology that does not allow them to accept and believe that after
25+ years of study by thousands and thousands of scientists with years of specific education and experience, that maybe there is some truth and accuracy in HIV science.

Keep up the blog and it should be interesting to see the conversations you have had with some of these deniers.

Anonymous said...

this is love your blog i just started mine last month for the same reasons you did. love the name: truth. I am tired of people talking a step back when i tell them i have aids. ignorance is bliss. great to meet you and will follow your blog. hope we can chat sometime.


Lloyd said...

I think you are one hell of a lady !! I love your blog and will read it daily, while I work on mine. I was hoping that you lived in Palm Springs, as I saw an ad on your site for something like, Palm Springs HIV Singles? Anywho, that's where I live. I think your story and attitude are amazing and you write like I do: just exactly how you feel, holding nothing back. Great to meet you and am excited about your blog.


Lloyd Wilson

Veritee said...

Thank you JTD I will be posting some of the conversations I have had with HIV/AIDs denialists.

Some are very upsetting, some jsut daft and soem even funny.
But to me their beliefs are always dangerous

Veritee said...

Hi Lloyd

Great to meet you and have your support. I will follow your blog too.
Thank yo for your kind words abotu em and my blog - I was never one to hide away whatever my life situation
And I may be new to HIV as someone with HIV but I am not new to it as someone who has done HIV awareness work as a professional in the past.
Nor am I new to many other life changing and challenging situations.

So my way is to meet it head on! Whatever life throws at you!

As I said on your blog I am just a beginner in this having only found out we - my husband and I - had HIV a couple of years ago sadly by this time we already both had AIDS and it has been a roller coaster journey already.

I am sorry we do not live nearby, as living in the depths of the countryside in the UK is at times isolating as there is little local peer support for those with HIV.

In fact I have tried to create it especially for women with HIV and indeed there are many.

But most local to me are not at all open - and having learned what I have I understand this totally - And they do not even seem to want to meet up even with others with HIV as they are scared of disclosure etc.

But we do have a local HIV charity and both my husband and me volunteer for this charity and they are opening a respite/retreat center for those with HIV very shortly.

This center is open to anyone in the UK and indeed worldwide who have HIV.

If you ever visit the UK you are very welcome to arrange to stay there!
Veritee XXXX