Subscribe to this blog's feedRecently an AIDSmeds poster expressed surprise over a friend’s positive HIV status because the friend “looks just the same”.
It goes to show that you can't tell by looking at a person whether or not they have HIV. We who live with HIV are your neighbours, your friends and lovers, your parents and children. We could be standing next to you in the check out line. We could be your lawyer or teacher. We could be you. We are you, because you live with HIV too. There will be someone who touches your life, in some way, who is living with HIV infection - whether you know it or not.
We might not choose to share our HIV status with you. Many of us are afraid to share and with good reason. We never, ever know how someone is going to treat us until after we've told them. If a person reacts badly, we have to live with the consequences. We cannot UN-tell.
There are many people who believe they have a right to know our status so they can “take precautions”, such as not shaking hands or sharing our company. Others believe they have a right to know so they can inform anyone they believe to our sexual partner – potential or otherwise. They want to know so they can point and whisper. Some like to host pity parties. It’s not pleasant to be on the receiving end of any of this and sometimes it’s downright dangerous.
When I was first diagnosed, I feared petrol bombs through the letterbox in my front door. I was diagnosed as part of a “cluster” of infections and within a week, the Rag of the Rock saw fit to publish a juicy story with all but our names and addresses. They named our town, on an island of 70,000 souls. As an old Manx saying goes: “If you sneeze in Ramsey one minute, they know in Peel the next”. I lived a nightmare of fear for months.
I had to tell my thirteen year old daughter, when I’d barely digested the information myself. I had no idea who knew about me, but I did know our cluster was being talked about by everyone - whether they knew our identities or not. Some of us were coping with alcohol and crying in the pub, adding fuel to the rumour mill. I knew there was a very real possibility another child would tell my daughter, after hearing from parents, that I – her mum - had HIV. I wanted the news to come from me, not a spotty-faced, leering teen, so I had to act fast when I wanted to bide my time. The Rag of the Rock forced my hand.
Vicious teenagers and petrol bombs were my darkest fears. Time went by – and nothing happened. No bullies at school, no bombs in the post. I was astonished and encouraged. I slowly stopped feeling like I had HIV tattooed on my forehead. My daughter took the news in her stride and met my doctor. It didn’t stop her from being an ordinary teenager, alternating between tantrums and hugs, and she’s grown into a lovely young woman who I am proud to call daughter and friend.
I’m lucky. For me, the horrible visions of persecution never materialised. I’ve experienced some negative reactions - nothing life-altering - but I know people who are damned to hell by loved ones and others who have been edged out of jobs, homes and lives. I know people who are so deep within the HIV closet they don’t even dare access the internet. I know people who are barely treading water in a sea of fear.
And I know there but for the grace of the universe go I.
I also know it’s a vicious cycle. Our hiding adds to our own stigma and that is perhaps the most bitter pill of all. We hide because we have to and we have to because we hide. But as we step out of the closet and into the light, people see us for who we really are. We are neighbours, friends and lovers, parents and children. We could be you. Only when people truly understand this will we be free of stigma.
When we are free of the stigma, we will be free of the fear.
And YES, it is scary out here, but I’m feeling the fear and doing it anyway. The more I look that fear right in the eyes, the faster it melts away. I know not everyone can join me - but I'll be here waiting for you.
Comments (10)
You said "The more I look that fear right in the eyes, the faster it melts away"
I can pretty much picture the fortitude in your eyes Ann! The above is what I want too, especially after reading what you wrote. But right now I'm still kinda hiding out :\
Posted by allopathicholistic | February 20, 2007 3:47 PM
Posted on February 20, 2007 15:47
Cute map of The Rock too. Seems like you can count the roads on 2 hands
Posted by allopathicholistic | February 20, 2007 3:49 PM
Posted on February 20, 2007 15:49
Hi, i am newly diagnosed... a week ago. i am just... at this moment standing next to you. Today i disclosed my status to two people i knew. True that i wasn't very close with them (guy and girl) we were co workers long time ago, but they heard i was sick and were suspecting and asked me about it.
I disclosed, first because i needed to... to keep this inside of me was a bomb. Second cause even if i wasnt very close to them.. they got near and worried... when my "closer" friends just fade away. I trusted and i said it. Then i feared about it :(... and though if i had done a bad choice.
I wasn't wrong, they were nice and understanding, got shocked, cried, were affraid but like good friends, they didnt leave. They standed next to me and say... it will all be all right.
I like your post, there is a part when you say "We who live with HIV are your neighbours, your friends and lovers, your parents and children. We could be standing next to you in the check out line. We could be your lawyer or teacher. We could be you. We are you, because you live with HIV too" and i totally agree.
In this world we ALL live with HIV, some of us suffer from it, some of us carry it. Those who suffer or carry are not necessarily infected nor hiv +, but we know someone who is, we deal with someone who is and we dont know or we will be carrying sometime if we dont protect. True is that world was designed for all of us to be together, and what affects me, also affect the live of people around me and they affect the lives of others around them. We are all interconnected, so the only way to manage this... is to accept us, and stay together, there is a need for us to come out to the light, in the right time, when we feel like doing it. Because bringing light to the world, can make of it a better place... and we can find our right place to be... and our exemple will help others. Only when we understand ALL THE WORLD LIVE WITH HIV, we can understand there is nothing to fear... and once we can understand that.. others will start to understand us.
I loved your blog, thanks a lot. your friend.
Posted by JuanCa | April 3, 2007 7:31 AM
Posted on April 3, 2007 07:31
Dear Ann, I just want to say that I really appreciate reading your blog. I am a case manager in Pocatello Idaho and I have been reading your words for a while now. You are very inspirational to me as a care giver as you help me to understand what my clients must go through every day of their lives. Thank you for your thoughts and feelings that you are so willing to share to help others. Hope all is well with you and that hopefully you are now in housing. Take care. Jo
Posted by Jo Fletcher | April 12, 2007 8:19 PM
Posted on April 12, 2007 20:19
We are a London based clinic in the process of trial treatments using a new herbal-based medicine effective in eliminating HIV virus. The medicine has been refined over the past 6 years. We have completed treatments for over 50 patients worldwide, all of whom have seen their viral count decrease significantly and CD4 count recover proportionally without any immediate or delayed side effects.
The duration of the treatment is normally between 3 – 12 months depending on the individual patient’s profile and the stage of the infection. This medicine has been proven to work consistently.
We are looking for candidates to join our on-going trial treatment programme. Our only objective is to expand our trial treatments so we can make it available to all as quickly as possible. Accordingly we are footing 100% of the cost of the medicine and shipping. In exchange we request that the patients provide us with periodic blood test results throughout the course of the treatment.
All of our patients’ information are automatically protected by confidentiality requirements as such we will not release any information onto any third parties without the patient’s direct personal consent.
We are investing our own money to pay for all of the costs of this program because this medicine has proven to work consistently and has huge potential.
Interested candidates can contact us via email at hiv.support.2001@googlemail.com
For more information visit: www.hivsupport.co.uk
Posted by hiv support | May 29, 2007 12:21 AM
Posted on May 29, 2007 00:21
Well said ANN!!
As I have grown older with HIV 17 years positive, I grown more quiet and secluded about my status. When first dx I told everyone, friends, family, strangers. As the years have passed I've watched those friends and family distance themselves from HIV. When I try to talk about it, the nonverbal cues make it a tad uncomfortable to continue with the conversation about my status, health, daily challenges. So I'v grown quieter. As for my gay friends, they too avoid the subject and keep a quiet, comfortable distance. I feel at times that my extended network is just watching and waiting to see what happens to me...as they can see I'm still the same, but they have changed.
As for work I was told some years ago that I could never work in critical care as nurse, due to invasive procedures well my now quiet demenor and not chatting openly about my status has landed me a job in critical care. My boss knows my status and thats all that needs to know. By keeping my mouth shut and my eyes and ears open, I'm moving ahead.
Posted by newbernswiss | November 7, 2007 4:39 PM
Posted on November 7, 2007 16:39
RETHINKING AIDS.............
http://www.rethinkingaids.com/
http://www.rethinkingaids.com/quotes/rethinkers.htm
http://www.shirleys-wellness-cafe.com/aids.htm
Posted by No HIV | March 31, 2008 6:33 PM
Posted on March 31, 2008 18:33
Check these webpages out:
http://www.newmediaexplorer.org/sepp/2004/07/15/aids_experiments_on_children_in_new_yorks_incarnation_center_a_human_tragedy.htm
Also check out the LINK (in webpage above) to THE HOUSE THAT AIDS BUILD - and check out those pictures.
Got on a blog at:
http://www.flingr.com/profile/UserID/521/
Some where in there you will see the VERDICT on a case won in December of 2007 - regarding HIV testing and the girl won millions. Why wasn't this on the NEWS? Why would ANYONE take drugs that could cause aids? Not educated? CORPORATIONS for PROFIT - medical industry for PROFIT ? Is there a genocide going on against blacks, poor, drug users, homosexuals, and/or ignorant?
Check out www.aliveandwell.org too ! :) BE INFORMED - don't lets DRUGS KILL YOU !
Posted by Louise | March 31, 2008 6:41 PM
Posted on March 31, 2008 18:41
If you knew the father's love (Father God - YHWH) you would not settle for lust, BUT accept his (Y'shua/the son of God)LOVE. It is free (God's love) a free gift to those that accept it. God brings you to all TRUTH and, LIFE IS WORTH THE LIVING... ! :)
Posted by Never settle for LESS | March 31, 2008 7:37 PM
Posted on March 31, 2008 19:37
Isle of Man - I was just signing off, and noticed you are familiar with the Isle of Man. My grandmother was from there, and I believe her childhood home had become a museum, if
I am not mistaken. I have never been there; however, I sent my parents there years ago
as a gift of travel to them - to visit where my dad's side of the family came from. I hope to visit
someday. Tell me a little bit about the Isle of Man - what you like most about it and how
you traveled there. As far as HIV myths - I used to believe them too. But, there is too much
information out there now for us to be ignorant. When I see homosexuals, drug users, or straight
people with HIV diagnose - "working for companies that promote drugs I think are killing them" it makes me think how those at the top (making all the money from those drugs) are PITTING
one against the other - to wipe them out = a class of people that do not consider of any value. Makes me think of what HILTER did to the Jews, Gays, and those Deformed - those he did not
consider of any value - and did it under a RELGIOUS (Roman Catholic Church) FRONT. I heard
that even JAMA (well respected medical journal) came out recently (past year or two) and said that HIV does NOT cause AIDS. Then the VERDICT in Mass., in December 2007 - that should have been enough to convince even the skeptic. I hope you research some of those webpages and
then join hands with those that are coming against the LIARS (in my opinion) that are promoting
these HIV lies and killing people with the drugs. Have a blessed day. Louise.
Posted by Isle of Man | March 31, 2008 8:39 PM
Posted on March 31, 2008 20:39