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19/02/2007 01:51

Recently 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.



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Comments on Ann Smith's blog entry "19/02/2007 01:51"

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 :\

Cute map of The Rock too. Seems like you can count the roads on 2 hands

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.

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

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 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.

I want to get in touch with people living with aids. Am a Ugandan aged 48. Otherwise its been great to stumble on this web site

"When we are free of the stigma, we will be free of the fear."

i thank you for this thought. i hope for everyone to have a freedom from fear. peace be with you friend.

Bewildered, confused and somewhat depressed chick from south Africa trawling the internet for sites on HIV and AIDs. it's been a month since i tested positive , am on Truvada and stocrin (sustiva), i guess it takes a while for whoever has to verify or vetoe on membership to actually do that --- a relief too in that i'm not trying to broadcast this to the whole world. i must say that it's even harder to get a south african site that offers some chat / networking window.
It's been a month as i said but i still have no idea what the hell i'm supposed to do with myself as an HIV positive person. Went through some weeks in the beginning where i couldnt sleep or even get up from my bed...and i just got angry everytime my doctor or my family kept giving the HIV is not a death sentence perp talk... i'm the one who goes to bed and wakes up with it every day, i'm the one living with it, going through it... and to have to explain my ups and downs is also tiring... sometimes i just need people to shut up and let me carry my cross or atleast fgure out how to carry it.

i'll losing my internet connection signal in a bit, hopefully i'llbe able to connect through the usual cannel with the forum and can chat. hope you dont mind that i just picked you to do that stupid rant. I just took my blue pill an need to li down.

Question: You smoke, drink? i've been handed a very ong list of cant haves an cant dos and the smoking is particularly hard when i'm at work and have to deal with the pointless stupidity and smallmindedness of the men and women i work with.

I might not be able to get through to The POZ forums as often as most people, so i'd ask anyone who want to e-mail to do so.

There is little evidence that HIV can be transferred by casual exposure, as might occur in a household setting. For example, unless there are open sores or blood in the mouth, kissing is generally considered not to be a risk factor for transmitting HIV. This is because saliva, in contrast to genital secretions, has been shown to contain very little HIV. Still, theoretical risks are associated with the sharing of toothbrushes and shaving razors because they can cause bleeding, and blood can contain large amounts of HIV. Consequently, these items should not be shared with infected people. Similarly, without sexual exposure or direct contact with blood, there is little if any risk of HIV contagion in the workplace or classroom.

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This page contains a single entry by Ann published on February 19, 2007 1:48 AM.

Sleeping in the Garden was the previous entry in this blog.

A Brim Full of Ashes When You’re 45 is the next entry in this blog.

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