Thursday 15 April 2010

GET A LIFE - Twitter ignorance & HIV Jokes!!!

Last night I stupidly tried to tackle HIV ignorance on Twitter.

  • I did not mean to as I had other reasons  to go on Twitter
  • As I often  look online at what was being said about HIV as I have become - without actualy planning too - an online HIV activist
  •  to find the latest research and knowledge being talked about HIV
  • so I did this last night, so I was up to date, before going to the HIV meeting I planned to go to today.


So after looking on Google etc I typed in 'HIV' on Twitter and did a search for anything relating to HIV.

I did find some good links and good up to date  information to knowledge and research but amongst this was appalled at the ignorance and jokes also being said on twitter about HIV and people with HIV. 
Sadly I live a sheltered life in the country and  truly did not really believe such ignorance still existed & that such horrible jokes could be made at the expense of those with HIV


Most of it was shocking but just too 'out there' to even bother with. But a couple of very silly jokes I could not help twittering back about.


I do not usually do this but I was pretty appalled by what I read and by young and intelligence people 
Yes I should not have as you should not join in as if people have theses views are you ever going to change them?


So one young woman got back to me and as she said she was a trainee nurse and as I admired her for  getting back to me I thought it was worth trying to tell her the facts and how damaging her joke had been ....and how wrong her assumptions were factually about HIV transmission


I so wish I had not bothered as I have ended up very hurt.
I really thought she was just misinformed so I tried but whatever she said she seemed to take the wrong way as if I was he enemy?? That nothing I said as someone with HIV could  be believed - like all people with HIV want to pass HIV on and are somehow to blame for their having HIV??


I should have given up, but I could see her profile online on myspace & Twitter &  that she had two young children and while she said on twitter she was a trainee nurse I was not sure but she did have a business like me as a designer 

and I felt if she had bothered to get back - maybe, just maybe , she did want to know?

But in the end I was accused by her  of being  ' like you're bored with shit to do'
In other words
GET A LIFE!

I have been told far worse but this young woman really got to me, sadly she made me cry,  where others have not.

I just so just wanted to explain where it really is and to educate.

As if she is really to be a nurse, ignorance like this will actually hurt her in the end - she may not know that yet but it will.  

If she is not a trainee nurse she has  children and what is she bringing them up to believe about HIV. Does she not realize that HIV will be any current child's problem in the future and  they need to know the realities of it - not to learn to dismiss HIV with a joke??


  • And she is right in a way as HIV IS my life - it is all of my life. I defy anyone with HIV not to find having HIV penetrates every single  inch of your life. Does she and others not realize how sad I am that my life in my 50s has now become HIV????



But I still have a business to run a family and  I have so much to do, does this person think I also WANT to be doing what I do re HIV? or care - no! of course not. If I did not have HIV my life would be very different

But I care when people put out stuff that perpetuates stigma and discrimination  - and I care more if they really and truly believe what they are saying and are not open to investigate to find out the reality.


Do they have any idea what it is like to live with HIV ? Of course not!!
 And on top of that how it is to be made a joke of. Nor do they seem to  want to know the facts

This person who said she was a trainee nurse, yet she made a joke about HIV that suggested that to drink out of the same drink as someone with HIV was a risk and would not believe that saliva was NOT a risk ? I thought everyone knew that saliva is not ?

If a trainee nurse perpetuates such fear and misinformation - what does the rest of the population of the world truly believe about HIV ?
When people talk to me that I know are they lying to me about  what they really believe to protect me and my feelings?

- but secretly underneath see all of us with HIV as a threat??

  • Also can you imagine what it would be like as someone with HIV to be nursed by a nurse that is so ignorant that thinks HIV can be passed on so easily and treats every patient she has with HIV as a dangerous threat to herself??
  •  
  • Not saying she or any nurse or medical professional shudl not protect themselves - I want them to protect themselves
  • But there is a big difference form protecting yourself and getting your facts so wrong you think you are at risk from saliva or any ordinary human contact with someone with HIV


My HIV nurse who takes my bloods every three months who is in her 50s herself and been doing HIV nursing for over 20 years does not even bother to wear gloves when she takes our blood!


She knows she is of NO risk - so why are not student nurses told the facts?


Yes they have to protect themselves. As someone with HIV the last thing in the world I would ever want would be a nurse - or anyone - to get HIV from me BUT I would never put them at risk because I know the facts.


But I also do not want to be treated like a pariah by medical staff if I have to go to hospital!!


To be presented as dangerous even to drink out of a can or cup with someone - this is what this person said on twitter that I felt I had to challenge. 

Of course that was not ALL the point as even though I know no one is of any risk if they shared a can of drink with me or anyone with HIV, the joke was that someone with HIV might offer a can of drink to someone and have a laugh as they shared it.

  • Yet this would not be at all funny to me or anyone sane with HIV
  • Nor would anyone with HIV share cans with anyone else usually, not only so as not to embarrass the other person but also because with a lowered immune system
  • We with HIV are of more danger from sharing cups, cans or anything than anyone without HIV is sharing with US!!!
  •  I so wish now  I had not bothered - what was the use - people are never going to believe someone who has HIV.

What HURTS me most is that some seem to think we WANT to infect others and are a walking infection reserve with no morals or care for others????
And that I tell lies - that I would tell anyone that saliva was not a risk if it was????? or would ell anyone any fact about HIV that was not totally so??


OK then
Back to my life


And YES I do have a life

2 comments:

Unknown said...

Well said V. Do not despair, not all are ignorant & callous. I can sympathise, as in early '80s I caught Hepatitus thro' no fault of mine. I know it's absolutely not anywhere near being in the same category as HIV, but it demonstrated similar issues to me. Luckily, I completely recovered and apparently have no residual effects bit I learned a hard lesson. At the time my wife & I had a baby with another one due any time & I too was prejudiced against, even by Medical Staff. Eventually I was allowed at the Birth of my second son, but only after a stand up fight! The stigma attached to catching a sexually transmitted disease is great. I never found out how I got it (despite all the suggestive comments from family & peers) and I am as certain as I can be that it wasn't from my wife. Best scenario was that I caught it from some injured drunk in the Street. (I was a Policeman & subject to deal with many situations which put me at risk) Take heart, some of us can & do relate to your anger & hurt at your innocent victimisation. Take care and do not let yourself be beatten down by other people's sad lack of humanity & compassion.

HIV and Us said...

Thank you Peter so much