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Author Topic: Disclosing on Facebook: Seeking Feedback  (Read 4678 times)

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Offline DiggerDive

  • Member
  • Posts: 14
Disclosing on Facebook: Seeking Feedback
« on: November 03, 2011, 11:05:31 PM »
I’ve had this conflict.  Sometimes I think if I say it out loud the burden will
magically lift off.  You know how your secrets and fears just weigh you down.
 
But I’m afraid, terrified actually, of you people.  I know the expression that goes with
“you should have” or “why didn’t you.”  I can’t say I blame you.  I
use to have those thoughts.  
 
I remember reassuring my mother and believing my words.  “Mom, please don’t worry, it will never
happen to me.  Never.”
 
And I remember this horrible dream.  I was trying to scream myself awake, and I couldn’t.  I woke up in a
cold sweat and my hearth thumping.  Seems kinda silly I suppose, but it was the worst fucking dream I have
ever had.
 
And I cannot forget the night reality sunk in.  I was alone and
sick.  All I could say out loud over and over: “I’m so sorry.”  
 
It’s a struggle for everyone, this secret.  Who to tell?  Who not to tell?  Who is safe?  Who will look
at me with pity?  Who will understand?  
 
This doesn’t feel to different from my high school survival techniques when I learned to size up people in a matter of seconds.  My instincts are still sharp.  But it is exhausting.  
 
Human beings are incapable of not putting people in boxes with clearly defined labels.
 
I wish I could unlearn that.
 
And I wish I could be more “don’t give a shit” like some of the people I know.  I envy that.
 
I’m proud mostly of how I’ve managed through most fears; from the highdive to the radio mic, I learned to push myself.  The highdive was like fear bootcamp.  Or maybe I’m just getting more lazy; because worrying takes a lot of energy –and I need what I have left for the volleyball court.
 
So, look out below Facebook Friends.
 
I am HIV positive.
 
What I say to me is this.  Good, smart, beautiful people make mistakes.  They make bad decisions every second of every day in a hundred different ways.  And it doesn’t matter how much knowledge you have in your head, because a lonely heart won’t think.  You don’t need to be scared.
 
I hope you will say it too.
« Last Edit: November 03, 2011, 11:42:43 PM by DiggerDive »

Offline tednlou2

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  • Posts: 4,887
Re: Disclosing on Facebook: Seeking Feedback
« Reply #1 on: November 03, 2011, 11:39:02 PM »
This is what you wrote to your Facebook friends?  First, how did you write all this?  I can't seem to write more than 150 characters before it says I'm over the limit.  Seriously, I admire that you told all your friends.  I have thought about telling my Facebook friends in an attempt to get the big secret off my chest and maybe gain some inner peace.  I know, intellectually, that coming out of the HIV closet is the best way to reduce stigma.  It is very similar to coming out of the gay closet.  The more gay people have come out, the more others have changed their views. 

     

Offline DiggerDive

  • Member
  • Posts: 14
Re: Disclosing on Facebook: Seeking Feedback
« Reply #2 on: November 04, 2011, 12:08:58 AM »
No, I haven't.  Sort of a fantasy I think.  I'm just test driving the idea.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Disclosing on Facebook: Seeking Feedback
« Reply #3 on: November 04, 2011, 09:01:07 AM »
Being out about my hiv status is the most liberating thing I have ever done. I highly recommend it.
Condoms are a girl's best friend

Condom and Lube Info  



"...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 GSOgymrat

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  • HIV+ since 1993. INTJ
Re: Disclosing on Facebook: Seeking Feedback
« Reply #4 on: November 04, 2011, 09:33:23 AM »
I think it is great if you want to tell all your Facebook friends about your HIV status to demonstrate someone they know has HIV and educate them about the disease. However, it concerns me that you have such an emotional investment in this announcement. How are you going to feel if you don't get the reaction you are looking for? Based on what you wrote, having HIV seems a very raw topic for you.

Offline PozJeepGuy

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  • Facebook - Jacob Perry
Re: Disclosing on Facebook: Seeking Feedback
« Reply #5 on: November 04, 2011, 01:08:03 PM »
I couldn't agree more with Ann. Just not to have that issue on your plate makes life a little easier
Jacob Perry

I refuse to wear my HIV as a badge of shame any longer.

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Disclosing on Facebook: Seeking Feedback
« Reply #6 on: November 04, 2011, 01:28:33 PM »
On My Facebook profile, my HIV/AIDS status is fully disclosed, and anyone that is a FB- friend can read & see my info, nothing wrong with any of this, and @ Ann YES it's very liberating  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline newt

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  • the one and original newt
Re: Disclosing on Facebook: Seeking Feedback
« Reply #7 on: November 04, 2011, 02:03:45 PM »
Well, for one, how may of them people on FB do you actually know, like might go for a BBQ or visit on holiday?

And two, the latest Lady Gaga video link (or another) is gonna eclipse whatever you ways in a matter of days if not hours. Some of me mates did it and were miffed at the little reaction it got.

Ruthless defreinding of wankers is recommended.

Disclosure is the only true freedom, has been said, and a scorpion held by the tail cannot sting you, has also been said. The feeling of freedom is heady, and if you own your story the power is yours.

- matt
"The object is to be a well patient, not a good patient"

Offline mecch

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  • red pill? or blue pill?
Re: Disclosing on Facebook: Seeking Feedback
« Reply #8 on: November 04, 2011, 02:42:50 PM »
To the OP
your post is too poetic, I don't get what you want us to comment on in this forum.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Disclosing on Facebook: Seeking Feedback
« Reply #9 on: November 04, 2011, 03:38:11 PM »
@ Matt  :D yeah buddy I hear ya there, Facebook and the like is all superficially overrated, and most of the time extremely annoying, but never-the-less, a great waste of time ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Growler

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  • Posts: 567
Re: Disclosing on Facebook: Seeking Feedback
« Reply #10 on: November 04, 2011, 04:13:00 PM »
I tried this Facebook thing but after people started sending me virtual livestock I decided I actually already had a life.

GROWLER
“If loving someone is putting them in a straitjacket and kicking them down a flight of stairs, then yes, I have loved a few people.”

Offline anniebc

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  • Posts: 5,939
  • AM member since 2003
Re: Disclosing on Facebook: Seeking Feedback
« Reply #11 on: November 04, 2011, 05:27:09 PM »
To the OP
your post is too poetic, I don't get what you want us to comment on in this forum.

Who are you to tell the OP his post was to poetic?..as far as I can see he wrote it in the way he wanted it to read, and he wasn't asking you or anyone else to actually comment on his post, or how it was written, at least that's how I saw it.

Digger I have been very public with my status but it's not for everyone,  as Ann said it's very liberating, I hope you get here one day, and feel the freedom it gives you.

Aroha
Jan
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline hope_for_a_cure

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  • Posts: 1,502
Re: Disclosing on Facebook: Seeking Feedback
« Reply #12 on: November 04, 2011, 06:05:49 PM »
FB is a great platform to express whatever you deem necessary. 

I limit my friends on it to people that I have actually met or correspond with in some way.  I can honestly say that all of my FB friends are people that I would actually enjoy hanging out with.  In my case, I dont post very personal stuff there and try to keep it fun. Go for it!  Post away.

One of the lines you wrote stuck in my mind after reading your post.  "Human beings are incapable of not putting people in boxes with clearly defined labels."  This is very true and unfortunately preconceived notions are developed on that basis. 

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Disclosing on Facebook: Seeking Feedback
« Reply #13 on: November 04, 2011, 06:28:02 PM »
There are two things I don't care about on facebook -- your fucking pathetic case of AIDS or your disgusting bout of anal warts.
"I’ve slept with enough men to know that I’m not gay"

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Disclosing on Facebook: Seeking Feedback
« Reply #14 on: November 04, 2011, 06:28:25 PM »
Little Boxes


Little boxes on the hillside,
Little boxes made of ticky tacky,1
Little boxes on the hillside,
Little boxes all the same.
There's a green one and a pink one
And a blue one and a yellow one,
And they're all made out of ticky tacky
And they all look just the same.

And the people in the houses
All went to the university,
Where they were put in boxes
And they came out all the same,
And there's doctors and lawyers,
And business executives,
And they're all made out of ticky tacky
And they all look just the same.
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline hope_for_a_cure

  • Member
  • Posts: 1,502
Re: Disclosing on Facebook: Seeking Feedback
« Reply #15 on: November 04, 2011, 06:50:22 PM »
There are two things I don't care about on facebook -- your fucking pathetic case of AIDS or your disgusting bout of anal warts.

Zackly!!  This type of information is best disseminated via twitter. 

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Disclosing on Facebook: Seeking Feedback
« Reply #16 on: November 04, 2011, 07:28:13 PM »
There are two things I don't care about on facebook -- your fucking pathetic case of AIDS or your disgusting bout of anal warts.

I tagged you in every cat picture I have.
"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline phildinftlaudy

  • Member
  • Posts: 2,965
  • sweet Ann what you think babe...
Re: Disclosing on Facebook: Seeking Feedback
« Reply #17 on: November 04, 2011, 08:03:36 PM »
I am pretty open about my status - but, I don't have it written right out on my FB page - but there are enough indicators there, that anyone who knows me would probably have a good idea. At some point - probably in the fairly near future I will "officially" disclose on FB. One of the reasons I have not put it on there is more out of respect for my mother. She previously expressed a concern that if certain extended family members knew or some friends of her (who live near her in a small town in Florida and in a close knit ---- translation "nosy" - older adult community knew, they might treat her different - and she doesn't want to deal with that - although, I know she would if she had to. So, out of a respect for her - at this time - I haven't put it directly out.

I definitely agree that it is liberating. My friends know, coworkers and boss know, and many of my contacts on FB know. And, of course, I have been involved and been getting more involved in public advocacy efforts and was even in an article where my real name was used that was written by David Evans (formerly of Poz.com).  All these things are fully searchable on the web (google, yahoo, etc.) - so, anyone who wants to finds out about phildinftlaudy, or Phil D (insert last name) could easily find out.

So, I don't feel that I am hiding it - rather, I disclose directly when I feel it is most appropriate - for the person or people to know or the situation, or more importantly depending on how I feel about disclosing - all things considered (including my mother's feelings).

I will say that if it wasn't for my mother's feelings - I would have more fully disclosed long ago - as I feel that disclosure takes even more of the disease's power away and puts me in control - regardless of the outcome - and goes even further to eliminate stigma.

I have been very surprised at how much of a non-issue my status is with most people. 

It is definitely an individual decision - and in regards to directly telling or posting on FB or elsewhere on the web - it is important to remember that once it is out there - there is no "un-ringing" the bell - so, one must make sure that they understand and are okay with that. Also, important not to try to predict the outcome or get upset if the outcome is not what is expected (for better or worse) - we can control what we say, but we can't control how others will react.  And, I don't say that to justify liberating oneself, rather I say it because so many times we get upset when people don't respond the way we think they should.... so prior to disclosing try to make sure you will be okay with whatever the outcome is.

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline mecch

  • Member
  • Posts: 11,709
  • red pill? or blue pill?
Re: Disclosing on Facebook: Seeking Feedback
« Reply #18 on: November 04, 2011, 08:18:42 PM »

I hope you will say it too.

Well I still don't get it.

You hope who will say what?

Are you addressing us in this forum.  You hope that we say... something (what?)?

Or is the "you" your public on facebook?  You hope they will say something?

Sorry to be so dense.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: Disclosing on Facebook: Seeking Feedback
« Reply #19 on: November 04, 2011, 10:57:19 PM »
Don't fret too much. As fast as the "stories" fly by on the new improved :P FB (if they show up at all  ::)), making a big ol' disclosure announcement will be off your wall within an hour or two. (If not, you need to LIKE more pages and get more friends to get that feed moving :D) You might as well just tweet it and move on.  ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Cliff

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  • Posts: 2,645
Re: Disclosing on Facebook: Seeking Feedback
« Reply #20 on: November 05, 2011, 02:05:20 AM »
I'm with Mecch....too long and poetic for Facebook; you'd lose me after the first sentence.  Rather than disclosing to your old Jr. high school friends you haven't seen in 20 years, do it face to face to your closet buddies.

Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Disclosing on Facebook: Seeking Feedback
« Reply #21 on: November 05, 2011, 11:26:12 AM »
Facebook is superficially overrated like all of these social network sties, twitter, and everything else, it's comical to see how everyone thinks every moment of their pathetic daily life is so important, the older you get the less important THIS shit becomes to you  ::)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Miss Philicia

  • Member
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  • celebrity poster, faker & poser
Re: Disclosing on Facebook: Seeking Feedback
« Reply #22 on: November 05, 2011, 11:32:36 AM »
Facebook is superficially overrated like all of these social network sties, twitter, and everything else, it's comical to see how everyone thinks every moment of their pathetic daily life is so important, the older you get the less important THIS shit becomes to you  ::)

Is that why you were just posting on there 16 minutes ago?
"I’ve slept with enough men to know that I’m not gay"

Offline denb45

  • Member
  • Posts: 5,051
  • "1987 Classic Old School POZ+"
Re: Disclosing on Facebook: Seeking Feedback
« Reply #23 on: November 05, 2011, 11:56:24 AM »
Is that why you were just posting on there 16 minutes ago?

Misery loves company darling  :-*
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline emeraldize

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #24 on: November 05, 2011, 08:55:05 PM »
Mecch and others...he was asked if he posted what he wrote in the first reply and this was his answer. Unless I've misunderstood his reply, he didn't post it -- he is/was just thinking about doing so.

No, I haven't.  Sort of a fantasy I think.  I'm just test driving the idea.


Offline LM

  • Member
  • Posts: 409
Re: Disclosing on Facebook: Seeking Feedback
« Reply #25 on: November 06, 2011, 09:46:32 AM »
It is definitely an individual decision - and in regards to directly telling or posting on FB or elsewhere on the web - it is important to remember that once it is out there - there is no "un-ringing" the bell - so, one must make sure that they understand and are okay with that. Also, important not to try to predict the outcome or get upset if the outcome is not what is expected (for better or worse) - we can control what we say, but we can't control how others will react.  And, I don't say that to justify liberating oneself, rather I say it because so many times we get upset when people don't respond the way we think they should.... so prior to disclosing try to make sure you will be okay with whatever the outcome is.

Perfect, very good advice.

Above all, it is good to do whatever gives you peace of mind, whether that's disclosing your status to everyone on FB or to no one at all. There is no "right way to go" on this.

Offline spacebarsux

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  • Survival of the Fittest
Re: Disclosing on Facebook: Seeking Feedback
« Reply #26 on: November 06, 2011, 12:56:36 PM »

And I wish I could be more “don’t give a shit” like some of the people I know.  I envy that.

I believe you should only disclose on fb (which means practically everone you already know and will get to know in the future) when you've truly 'owned' the attitude, that you presently seem only to aspire to.

Best
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline David_CA

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #27 on: November 07, 2011, 03:08:18 PM »
A good friend of ours disclosed on FB a couple months ago.  In July, he was diagnosed HIV+, had PCP pneumonia, severe anemia, and around 17 T-cells.  He was in the hospital for a couple weeks.  'Most all of his FB friends are gay men, and many are HIV+.  Along with stating that he was HIV+, he 'asked' that others not be so slack about testing and knowing their status.  At this point, he was out of the hospital, on meds, and doing better.  I kind of admire him for it, as he went ahead and got it over with, though I'd have a hard time disclosing on FB. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline weasel

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #28 on: November 08, 2011, 04:28:45 PM »
Who are you to tell the OP his post was to poetic?..as far as I can see he wrote it in the way he wanted it to read, and he wasn't asking you or anyone else to actually comment on his post, or how it was written, at least that's how I saw it.

Digger I have been very public with my status but it's not for everyone,  as Ann said it's very liberating, I hope you get here one day, and feel the freedom it gives you.

Aroha
Jan

    Very well said Jan  :)

   I think most of my facebook friends know that I have AIDS .
    I have lived long enough not to care what people think of me or
 what I do or have or what I may say  :o

   The " Freinds " that defriended me did so because they felt  I was  harming  THIER  image . WTF ?

       To the OP I say when you are comfortable drop a few hints .

    I started with HIV/AIDS   friendly sites as friends then just came out and said

 DEC 1   IS AIDS DAY ! THINK OF ME  ! Know that I will be OK

                                                                          Weasel

 

" Live and let Live "

Offline tednlou2

  • Member
  • Posts: 4,887
Re: Disclosing on Facebook: Seeking Feedback
« Reply #29 on: November 08, 2011, 11:38:54 PM »
    Very well said Jan  :)

   I think most of my facebook friends know that I have AIDS .
    I have lived long enough not to care what people think of me or
 what I do or have or what I may say  :o

   The " Freinds " that defriended me did so because they felt  I was  harming  THIER  image . WTF ?

       To the OP I say when you are comfortable drop a few hints .

    I started with HIV/AIDS   friendly sites as friends then just came out and said

 DEC 1   IS AIDS DAY ! THINK OF ME  ! Know that I will be OK

                                                                          Weasel

 



People actually defriended you?  I've had 2 female "friends" who both had sex with minors when they were 18 and 19 defriend me for talking about gay issues too much.  Both had become religious nuts.  I guess they were trying to run away from the minors thing.  But, to defriend someone for having HIV/AIDS is another story.  Were they making a moral judgement?  Or, their friends might think they've had sex with you, since they are friends with you?  Crazy!  But, better to just weed them out.

Oh, I forgot about my former partner, who has AIDS and got all religious and married to a woman, defriended me, because one of my male friends was shirtless in his profile pic.  So, he was obviously going through my friends list.  He told me he was still fighting the gay thing...lol.  He acted like I was promoting gay porn or something.  Then, he requested to be friends again.  People are strange, indeed.       

Offline Miss Philicia

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  • celebrity poster, faker & poser
Re: Disclosing on Facebook: Seeking Feedback
« Reply #30 on: November 09, 2011, 02:12:32 PM »
... life in the the South
"I’ve slept with enough men to know that I’m not gay"

Offline skeebo1969

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #31 on: November 09, 2011, 02:22:57 PM »


  crossbreeding......  the North's best kept secret. :D

  I would also like to give a thanks to facebook for defriend, unfriend, or whatever you choose to call it......
I despise the song Love is in the Air, you should too.

Offline Denver Toad

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #32 on: November 09, 2011, 07:03:48 PM »
Digger.

Perhaps a better place to start would be a blog. Invite those you feel comfortable sharing disclosure w/ and expand as you feel able. Your theoretical FB post would be a good start.

In the end I have to agree w/ Ann and others that said disclosure is liberating. And w/ practice becomes easier and can open surprising doors. Good luck.
Life is short, Break the rules, Forgive quickly,
Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

Offline tednlou2

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #33 on: November 09, 2011, 07:43:22 PM »

  crossbreeding......  the North's best kept secret. :D

  I would also like to give a thanks to facebook for defriend, unfriend, or whatever you choose to call it......

Lol....There are debates in forums as to which word is the correct one to use.  Some get very technical about it.  How would ya like to be the moderators of those forums?

http://abcnews.go.com/Technology/AheadoftheCurve/unfriend-defriend-facebook-fans-debate/story?id=9106240

Offline wolfter

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #34 on: November 10, 2011, 09:14:21 AM »
I've been unfriended too much to care.  I don't blatantly post anything offensive but I also don't blatantly hide my life.  That's their issues, not ours.

I've had numerous times where friends and family have sent me pm's to let me know they can see things I comment to other people.  And????  Since the site is more family oriented for me, I keep it civil and vulgar-free, but I'm not creating a fake persona to comfort those who might have issues.

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline emeraldize

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Re: Disclosing on Facebook: Seeking Feedback
« Reply #35 on: November 10, 2011, 10:04:50 AM »
Hello DiggerDive,

Are you still around?

Em

Offline DiggerDive

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  • Posts: 14
Re: Disclosing on Facebook: Seeking Feedback
« Reply #36 on: December 01, 2013, 12:42:15 PM »
Hi Em - still kicken' it!  How are you doing?

 


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