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Author Topic: disclose or not, an ethical delima  (Read 8781 times)

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Offline yipiee

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  • Posts: 19
disclose or not, an ethical delima
« on: May 20, 2010, 02:41:46 AM »
I would like to discuss the concept of disclosing to ones community, family and friends...

I have personally chosen, as being newly diagnosed, to not disclose for the first year.  (I am not sexually active, and if I were, disclosure would be an unequivocal imperative) My original reason, was that having experienced breast cancer 8 years prior, I am all too familiar with the way people come to you and want you to comfort them, and reassure them that you are going to be alright.  When I was sick, exhausted and did not have the energy to spare, my family and friends wore me to the bone...

At first (just last November) I was diagnosed with HIV, I have to confess, I thought it was a death sentence. there was absolutely no way I could look them in the eye and reassure them that I would be alright. I now know, this does not need to be the case.  I have responded wonderfully to meds, have an amazing therapist, and am learning how to navigate this 'new' life.

I stick by my original vow to myself to wait a year before disclosing to anyone (the exception is my former husband with whom I am fortunate enough to get health Insurance through, and my recent former BF)

One of my mind sets as I talk to myself is... and truthfully believe ... is that if I had MS, or Cancer, I would not disclose.  I would hold those cards close to my chest except for a few very very close friends and confidants I would live my life without evoking the pity goggles people have a tendency of wearing...  even if they proclaim they do not...  they do.  I am guilty of it myself.

so I am curious...  what are some opinions you ladies have on this subject? 
Thank you for your input.

Offline 206krissy

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  • Posts: 4
Re: disclose or not, an ethical delima
« Reply #1 on: May 22, 2010, 10:22:41 AM »
hi there; my first day on this site; looking forward to being on here and talking to folks

it's a huge stress; disclosure and i've been "sick" since 1995 and i still struggle with it b/c i've told people that were fine and i've told those that weren't.  now, i tend to only let family and friends know and once in a while i tell someone that it changes their life and that feels great. 

i just moved to a little town in virginia from seattle and i can't see myself telling anyone here anytime soon. 

i've had men in my life that i've told and those i haven't so believe me i've experienced all the emotions that come with this status.  it's very hard.  i think its okay to wait and i also think that you are allowed to tell when you're ready unless its a sex thing. 

i will say this; you'll be okay.  i have had very little problems since being diagnosed, i had a daughter born hiv negative and i was 19 when i found out i was "sick".  i am now 34 going on 35 and i am undetectable.  i

i've been extremely lucky and i know that.  hardly any side effects from meds.  it'll be okay; good luck

Offline Queen Tokelove

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Re: disclose or not, an ethical delima
« Reply #2 on: May 22, 2010, 12:07:36 PM »
Hi. We have had this discussion before in the ladies forum. You would have to go back probably a few months to find it....

I believe disclosure is a personal decision, no one can tell you when the time is right. Also who you decide to tell as well. Only you would know how your friends and family would handle it. I have had my family use my status against me before even giving me the chance to disclose. I have had friends who got mad at me and told my status to others. I have lost friends and even had death threats. But I have also had people would accepted me after telling them my status. The only peope I tell asap is people in the medical profession.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
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Offline missy

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  • Posts: 86
Re: disclose or not, an ethical delima
« Reply #3 on: May 23, 2010, 02:22:39 PM »
Hi Gf,
just my two cents.  I don't think it is an ethical decision, I think it is a personal one.  I have chosen not tell anyone except my family.  There are still a lot of people out there that just don't understand how you get HIV. So other than my doctors and people with a need to know, I have chosen not to share. With the exception of my BF who is also Poz (I did not get it from him) I don't feel it is anyones business. 

~M

Offline BT65

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Re: disclose or not, an ethical delima
« Reply #4 on: May 23, 2010, 05:58:14 PM »
I agree with Missy; this is not "unethical" or "ethical."   Someone disclosing is extremely personal, a decision not to be taken lightly.  We all know the people in our lives, and what they would do or say should they find out.

Regarding myself, most everyone who's in my life knows.  I've been diagnosed poz since 1989, and experienced some of the more serious ills that come with the diagnosis of Aids, and a weakened immune system.  So, in my case, the people needed to know.  Luckily, the people in my life who know, have been very supportive.  There are a few people who don't know, but they're really not close relatives or friends. 

That doesn't mean that's the right decision for everyone.  You having gone through breast cancer, and knowing how everyone reacted to that, is kind of a "heads up" I suppose.  No condemnation here for your choice to not disclose.  Good luck, and I hope we hear from you more in our ladie's section. :)
 
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline yipiee

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  • Posts: 19
Re: disclose or not, an ethical delima
« Reply #5 on: May 24, 2010, 10:20:37 PM »
Ann,
hmm, I hadn't thought when I used the word ethical, that the flip side would be unethical.  Thanks for making that distinction.

I spoke with my doc today about how the "stigma" associated with HIV is years behind the meds and treatment (her position she shared with me).  We spoke about how one person CAN make a difference.  Had I had the experience of knowing a close friend, a low risk woman like myself, and learned More about it, I may have been better prepared to deal with the diagnosis, let alone perhaps avoid all together.  We spoke on how personal the decision is. 

Part of me thinks that if I do share, and I help one person, friend or stranger, it could be wonderful...  but I do not think I will.  It is too close, and too hard and the weight of the stigma is too heavy for me.  I guess I'll not be a warrior for changing the minds of the masses.

lol, at least not today.

Offline Lovinglife

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  • Posts: 24
  • Life is too short for fussing & fighting my friend
Disclose or not
« Reply #6 on: June 09, 2010, 10:27:12 AM »
I have been positive for over 25 years and from the very beginning I have been open about my status.  It is not an easy road to go down, but I am okay with it.  I have some amazing people in my life who love and support me.  Over the past 25 years the three guys I have dated have all been, and still are, negative.

I recently went to a dentist and when they looked at my paper work the whispers started and one of the hygienist refused to clean my teeth, but another one was fine with me and she was very nice.  I do not take other people's opinion of me personally.  It is not about me.  It is about their lack of knowledge and their fear.  I know that it is their shit not mine.  I walk with dignity and grace for who I am.

When I wake up in the morning I have to be okay with me and that is the bottom line.  Everyone makes their own decision on how they deal with this.  There is no right or wrong way.  It is a personal choice to disclose or not.
Life is not measured by the number of breaths we take but by the moments that take our breath away.

Offline Donna

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Re: disclose or not, an ethical delima
« Reply #7 on: June 17, 2010, 08:54:43 AM »
i never thought of it as ethical (although i am a bit of a warrior and crusader). For me it was psychological - what would make my life easier to cope with? I first thought open declaration was best so no one would whisper and i wouldn't have to listen to those dreadful conversations when people talk in hushed tones about "the stigma of the positive" and how awful it all is (I live in Africa). Also, being in warrior type circles (i used to work for an NGO), i would often find myself in the middle of a conversation about Aids and feel funny not declaring it; as though i was harboring a terrible secret. So, i decided to tell quite a few friends in the hope that the news would spread fast and that would be that.

Well, it didn't work out like that. First of all, i had your experience. Within a couple of weeks, i was exhausted from having to deal with other people's responses to my threatened death. Or their not knowing what to say, their awkwardness and fumbling. And in fact, most of those people who heard from others found it impossible to approach me so the rumour mongering happened anyway.

So now, i drop it into conversations when and if i want to, and i don't if i don't want to. I take my meds openly and if someone asks what pills i'm taking, i tell them, and i don't comfort them. But, like others, i always tell medical people. So, don't tell until you're comfortable, but maybe it's not necessary to give yourself such a tight "deadline" (excuse the pun). Tell when you're ready, tomorrow, next year, whenever  ... Donna

Offline revann33

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  • Posts: 12
Re: disclose or not, an ethical delima
« Reply #8 on: June 17, 2010, 12:19:36 PM »
When I found out in 1987, I wasn't given a choice about who was to know and who wasn't.  I knew I was going to die (after all the dr told me I only had a year to live), so I told my mother I had an aggressive cancer.  She went to my dr and he told her that I didn't have cancer, but I was dying and she needed to talk to me.  After trapping me in a room I finally told her I had AIDS.  She then went out and told EVERYONE.  When it happened, my life was miserable.  Today, I do not hide.  I am even grateful to my mother for her actions.  I had to come face to face with reality, I learned who my "friends" were quickly.  Turns out I only had one true friend.

I can tell you, that more people were helped because all of a sudden they knew someone with AIDS.  My new dr at the time, told me that there was a sudden spike in people who wanted to get tested as well as get more information.  Yes, it was because of fear, but people wanted to make sure I didn't infect them.....funny how it works.

Today I am a strong woman who doesn't care if people know.  AIDS doesn't change who I am.  And Y, I too am a breast cancer survivor (as well as cervical cancer) and I found out years after finding out I had AIDS, I can tell you that I hated the pity that people thought I needed when I went through those.  Eventually, IMHO, when they see you living your life and not stopping, then the "pity" goes away.

This is just my experience.  I hope it helps some.

Offline yipiee

  • Member
  • Posts: 19
Re: disclose or not, an ethical delima
« Reply #9 on: December 23, 2010, 05:09:51 AM »
I have now had a few experiences, and all of them have shown the heaviness and sorrow in the burden of disclosing.

I have told each and every health care professional.

A few good friends with wildly mixed reactions. From love and acceptance to being ignored and shunned.

Just last week, I had to disclose to a gentleman who had been persistant in wanting to date.  I do not have high hopes for the outcome of that situation...
This will not be easy, in any way.  The fear and stigma is so strong.

I can see myself turning inward, away from sharing - living with an open heart.  So much was taken from me, when the person who passed it to me, did not disclose. 

Discolsing is the only thing I can do.  If I don't/didn't  - i would be taking away another persons right to choose, taking their free will.  Akin to slavery. playiny russian roulette with their bright future...

i wasnt given the choice to knowingly head into this new life, but now I am relegated to live in it's prison, because of someones inability to be brave - be honest - be the best part that a human being can be ... instead, he was the worst ... and I pay the price for his lies.

maybe this sounds a harsh condemnation.  But it is how I feel today, a little over a year diagnossed now.
I will survive, and thrive.  but it wasn't fair.  I know, I know - life isnt fair... well, im breathing proof now aren't i.

yes Im a bit bitter today. but this too, shall pass.
good night - and good luck all you wonderful beautiful inspirational pozzies! 

Offline TabooPrincess

  • Member
  • Posts: 279
Re: disclose or not, an ethical delima
« Reply #10 on: December 23, 2010, 04:19:11 PM »
That just made me cry, it just smacked in my face the exact reality of my own situation.  HIV is surrounded by lies....but they're not mine.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline mecch

  • Member
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  • red pill? or blue pill?
Re: disclose or not, an ethical delima
« Reply #11 on: December 23, 2010, 07:28:29 PM »
too much christmas champagne, that makes two forums I shouldn't have posted in. My apologies!!!!
« Last Edit: December 24, 2010, 05:04:58 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline TabooPrincess

  • Member
  • Posts: 279
Re: disclose or not, an ethical delima
« Reply #12 on: December 24, 2010, 03:28:59 AM »
True say.  But I thought you were male Mecch?
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: disclose or not, an ethical delima
« Reply #13 on: December 24, 2010, 03:41:11 AM »
True say.  But I thought you were male Mecch?

It's true. Mecch should not be posting in the Women's forum. He probably got here through the "unread" page.

Mecch, please be more careful about where you're posting in future. Thank you for your cooperation.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline dulce_angelita

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  • Posts: 2
Re: disclose or not, an ethical delima
« Reply #14 on: January 08, 2011, 02:53:29 PM »
I was diagnosed October 2010. I'm 21 years old and I'm also a mom. I don't just tell people, I educate people, especially teens. I feel its my duty to tell so that no one else makes the same mistake. I contracted the irus from a guy who assured me he was tested, and said I was the only woman he was sleeping with. Since I was on the birth control shot, I wasn't worried about getting pregnant again. He lied to me, and because I trusted him, I'm infected. This is why I tell people my story because you can't always be too trusting and MUST always protect yourself

Offline yipiee

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  • Posts: 19
Re: disclose or not, an ethical delima
« Reply #15 on: August 04, 2011, 02:59:01 AM »
More time has passed.  I just re-read my own post, and got teary eyed. It hasn’t gotten easier, per se. But acceptance has settled on my soul. I “act as if” I am not effected, but every action is steeped in the knowing. 

I walk solid, and true. I refuse to act a victem.

I have mourned the loss of lightness.
 
it is I, I am HIV, weather or not I wish it.

HIV is part of me.  Like my hazel eyes ... i carry it with me, in all I am and all that I do.  ever me, deeply heavy.

Offline worried100

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  • Posts: 36
Re: disclose or not, an ethical delima
« Reply #16 on: August 04, 2011, 01:50:03 PM »
More time has passed.  I just re-read my own post, and got teary eyed. It hasn’t gotten easier, per se. But acceptance has settled on my soul. I “act as if” I am not effected, but every action is steeped in the knowing. 

I walk solid, and true. I refuse to act a victem.

I have mourned the loss of lightness.
 
it is I, I am HIV, weather or not I wish it.

HIV is part of me.  Like my hazel eyes ... i carry it with me, in all I am and all that I do.  ever me, deeply heavy.


This is exactly how i feel its been two years and only now am i starting to look to the future,but it is always there in the back of my mind :(

 


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