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Author Topic: Are there people who NEVER disclose and live with this secret all their lives?  (Read 14444 times)

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Offline spacebarsux

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Hi all,

I only found out I am poz at the end of January, so I apologise if I sound a little naive.

The shock of the diagnosis is slowly starting to wear off, but only slowly.

I have interacted with other pozzies online etc, and it is obvious that everyone has different ways of coping/ handling this disease. Some people have disclosed only to family, some only to friends (not family), some to both, some only to their spouse and there is a certain set of people who have not disclosed their status to a soul.

I still think I am not ready to disclose to anyone just yet. Like many have said- once the information is out there, you have to be prepared to face the consequences. I know everyone's situation is different- but I feel like I am stuck in a really awful situation. It is really really hard keeping such news bottled up inside of me (I am only 27 and single)and not sharing with close friends/ family but at the same time- I have NO IDEA what reaction to expect.


If i think about this objectively- I know that I have just caught a virus that exists in nature_ i am not defined by it in anyway, nor am I going to let it rule or ruin my life. However, I have some moments where I feel so despondent that I feel that I have internalised all the stigma that society in general holds of poz people. I feel like I have let everyone down- those who love me- especially myself.

Sorry, for rambling on but i just needed to vent.

I guess it boils down to two things i wanted to discuss. Firstly, are there people who keep their status all to themselves and never disclose? How do you feel about it? Does this secret  ever suffocate you mentally?
What bout people who kept this secret for years and then eventually told family/close friends. How was it during that time -prior to your disclosure. Did u regret keeping it a secret so long?

 I don't think this option would be healthy for me- but then disclosing would probably big another host of problems to already add to a bad situation.

I am getting counselling about these issues.
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%

Online Miss Philicia

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Q: Are there people who NEVER disclose and live with this secret all their lives?

A: Yes, I know one.  Got infected when he was 18, kind of disclosed to his parents because he went on disability, but told them he was infected by giving blood and not by taking cocks up his ass, never told them he was gay, then 20 years later after decades of secrets he overdosed on drugs two weeks ago and died.

Nobody will insist that you tell people immediately, though certainly it helps with close friends -- you DO need support even if you don't think you do, or else you'd not bother posting on a forum like this.  But keeping something a secret year after year, hiding medication from family, will definitely effect your mental state.  People then either turn to drug use or commit suicide.  People still die from HIV/AIDS but IMO the majority of these cases are not treatment failure, but mental health issues.  It's fully documented in numerous studies that the rate of anxiety/depression with HIV patients is 12 times the rate of the general population -- but take a look around these forums and you'll see that the mental health section is the most under utilized forum section here.  Sad, but true.

I'm happy to hear that you are being pro-active with this issue and seeking the assistance of a mental health professional.
"I’ve slept with enough men to know that I’m not gay"

Offline drewm

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I would guess there are people who tell everyone...the bag boy at the grocery store, the mailman, the apartment complex manager even the lady standing in line at the bank and there are others who take the secret to the grave.

I look at HIV/AIDS like this. I disclose on a need to know basis. My family knows and my close friends know. How I arrived at that decision was basically with this concept. Will my diagnoses affect their life one way or another? If the answer is yes, then I disclose. When I disclose, I also decide how far to go with the discussion. A lot of people at work know I was hospitalized last spring but how much each person needs to know is based upon my relationship with that person and if they really care or are they just a nosy bitch?[/b]

It's always going to be a judgment call but at the end of the day it's my decision whether to disclose or not and I am the one who must live with the consequences either way. I hope this helps...
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline wolfter

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I was determined to never disclose and planned on taking my diagnosis to my grave which I almost did.  I only disclosed to my family after a life threatening illness and there were some hurt feelings on their part which I truly understand now.  In hindsight, the emotional burden of secrecy was much worse than disclosing. 

There are going to be a large scope of opinions on this topic and we all bring all of our individual life experiences into the debate.  Once I discovered that my strict Southern Baptist Christian family members didn't condemn me to hell, my fear of disclosure has disappeared.  I personally don't walk around with the scarlet A on my forehead and use the "why do they need to know" criteria for any further disclosure.

I hope this helped.
Greg
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline denb45

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If someone asks me I'll disclose, I have no shame & certainly no judgment, most people I've have met in my lifetime don't really care, and if sex dose come up, there's always safe-sex, and most people know what that is and how to be safe, I always tried to educate those who weren't up to par on this, but, you can't always help someone, if they don't want any, it's up to them if they want to remain bigoted & biased about HIV/AIDS, there is just way too much info out there for anyone who wants to know, just my 2 cents  ;)
« Last Edit: March 17, 2011, 01:47:23 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline spacebarsux

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Thanks for the thoughts everyone. denb45- I should clarify, I wasn't referring to disclosure to potential dates/ sex partners- I am only referring to disclosure to family/ close friends. I guess what I am afraid of is adverse reactions and/or people viewing me differently, which I am sure is what makes a lot of people nervous.

Yes, I know that the friends/ family who decide to drop you due to HIV status don't really derve to be around you at all. But on the other hand, when one is already feeling pretty much like crap - if those closest to you disown you then- even the bravest people would crumble, right? That's what scares me.

So, put another way- I want to strengthen myself and prepare myself for the worst before I disclose- cos I don't want to end up doing something really stupid if i can't or am too weak to face the consequences. Does that make sense?
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 denb45

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The close family & friends thing is fine, I don't think anyone will dis-own you, like you said, screw em' if they do, don't worry, I think you got a very good handle on the way you want to disclose, so, that's a good thing, you'll  be just fine, it's really not as bad as it may seem ;) you are still a human being, and all you have is a virus nothing more  ;)
« Last Edit: March 17, 2011, 02:32:54 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline mecch

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Well logically, if someone never discloses to anyone, they wouldn't be online here, cause this is virtual disclosure, and we certainly wouldn't meet them in real life.  So how on earth can we know how that works out for them? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline spacebarsux

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Hi Mecch, Kinda know what you're saying but don't entirely agree lol.

I mean,  could there be members who participate in these forums ( I fail to see how this is virutal disclosure cos it is so damn easy to hide your identity and no one really knows who you are until you divulge that) but have not dosclosed to people who actually know them in reality i.e.- family/ friends.

I am a living example of the sort of person I am talking about-  but in my case it has been just a month and a half since my diagnosis and I am not going to live with this secret forever. I was interested in people who've hidden this from people in their lives much much longer. Or even people who did conceal it for a long time, but then eventually came out. I am keen to understand who hiding such a big fact from those close to you affected their mental state.
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 mecch

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Well you are pretty new to HIV+ life. So if its not your time to disclose in "real life" then hang out here and particpate.  We are real people.  And it seems more than half of the regular contributing members are also publicly identified. 
Im not in your shoes cause I diclosed to all my friends when it happened.  But I keep my identity discrete here for professional reasons.
I think as soon as you are talking in this forum, you are not alone, and you have disclosed to people. Again, we are all real people here.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline tednlou2

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I've not actually disclosed to anyone technically.  My partner learned my dx at the same time I did, because he was there.  Besides him, there are 2 other people who know--my brother and his partner.  They found out, because a nurse indirectly outed my HIV status in front of them.  They are both in the medical field--both doctors actually.  Neither have ever asked about my health, labs, mental health, or whether I'm on meds.  This caused a huge fight not that long ago.  If they weren't going to be any support at all, I kinda wish they didn't know.  Maybe it is just one of those things that they don't want to bring up, because they think it will bring me down or something.  I suppose it could be like when you're with someone with cancer and having fun, laughing and all that.  You don't want to bring up cancer, because you're afraid it will ruin their mood. 

So far, I haven't told anyone.  My best friend just moved in with us and I thought about telling him.  I don't want to be hiding things in my own home.  If I tell him, it will be like telling everyone.  He cannot keep a secret.  Maybe that is how I could disclose--just tell him..lol.  I've actually written a post on Facebook telling everyone I have HIV, but I deleted it.  I'm sure I'll eventually tell my family.  Trying to keep such a huge secret is mentally hard.  I often feel like I could help my friends by telling them.  Many of them are serial barebackers.  I'm sure my friends and I know several people who are poz, but they keep it a secret, so we don't think it happens that often. 

I haven't told, I think, mostly because I don't want people to worry and I've always been very secretive.  And, I don't think I could handle any kind of rejection right now.  I don't think anyone would reject me as in disown me.  But, I could see some nervous about eating something I cooked, kissing me, or nervous about their kids around me.  We just had a discussion about kissing and HIV here, so it would be hard to blame people for being nervous.  There is still so much misinformation and ignorance.  I also have this thing about protecting myself and gays.  I think by telling, people will think HIV is what happens when you're gay.  I know I shouldn't worry about what people think, but I do.  I don't want to give the ultra-religious members of my family the satisfaction of thinking they are right.  Again, I rarely see that part of the family and shouldn't worry what they think anyway.  Having said all that, I do think the mentally healthy thing to do would be to disclose to everyone in your life who is close and special to you.  I'm not sure telling the neighbor would do any good, but ya never know.  Telling the neighbor would help with all the stigma maybe.         

Offline spacebarsux

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Hi Ted,

I understand what you mean! In my case too- only my partner knows- and that's cos I told him within 5 seconds of learning my status. No one else does. Not yet.

From your signature line, I see that you found out about your infection in 2008 and you've kept it to yourself until now? Wow! Well, at one level I admire you for holding it in that long, but then it seems that keeping it all to yourself must've been pretty hard and aguishing. That is exactly my dilemma.

I really really don't want people close to me to start treating me differently and changing their behaviour. I mean, if someone says they have Diabetes- people don't bat an eye lid, but with HIV its a completely different thing.

Well, I know that over time no one will reject me. But i can't predict their short term reaction and/or change in behaviour. The same sort of stuff- sharing food etc. It doesn't really help that I live in very superstitious/ religious country where everyone has prejudices.

Well I know I will just have to pick the courage and bite the bullet - sometime  not too far away.
For now, i am glad I can talk to you guys :)
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 elf

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I would only disclose to people who are familiar with the subject (for example, my parents, who work in the health sector)...The ones who will say ''People live with this''...Not to the ones who will say ''I'm sorry. You're gonna die''.

You never know how people are going to react.
I'd say that less is more, and remember Gillian Anderson: Trust no one.  ;)
Let's have a Kiki!

Offline TakingAChance

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A long time ago I had a Partner with full blown AIDS in Hospital and I was the only one who knew why. I was lucky he disclosed to me. He was not going to. His brother lived with him and called me when they took him away in an ambulance. He didn't know why they took him? I badgered him until he died to tell his Family and close friends. He could only tell them he had cancer and left it at that. I always felt his deep secret life style and now health status was causing him more illness. I always thought I was right about this. That if he was more honest about his disease he could face it and challenge it and beat it. I thought. 

 Now I am HIV positive. I told my best friend because he was with me when I got tested. While he waited with the other facilitator it was obvious something was up because my guy had to keep coming out to get the other test and forms etc. he told my friend that that was bad news and to prepare for it. Can you believe that? At a well established AIDS org. this happened. So when I came out he told me that story and I had to tell him. But I wasn't going to at first. Then I called 2 positive friends next. Not immediately. After I sat for a while with it. I figured rightly, they would give me my first support. Then I told my best friend back home who has known me all my life. My two negative friends I told to alert them. I was careful and something went wrong. So they needed to know to be more active with what was going on during sex. and so on..I have since told 2 more people where I live because none of my friends live by me and I was already stuck finding a ride for a colonoscopy. each time I divulged it it felt freeing. Thats all the people I plan on telling besides my Drs. and medical people. if asked though I am sure i will answer yes. to anyone asking my HIV status. I am learning there is now shame or guilt for having it. That stops with me. I like "Need to know " basis. Support is necessary though. I come from a recovery place where the is an axiom that goes, You're only as sick as your secrets". Meaning, your secrets will make you sick. You be your own judge though. No one else has to live with the out come but You.
Fasten Your Seat Belts...It's going to be a Bumpy Ride!

Offline newt

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It's odd, I tell people on the web in public, at meetings, at the bus stop, on trains, in saunas (not always heard), dates, workmates, drug company reps, crowds in football stadiums in Africa (like, yes, there are white blokes with HIV in Europe), most of me friends, doctor, optician, dentist. But ain't told me brother and ain't told me very best and oldest friend because I just want them to think of me as how I's always been (coward or what?). Told me mum once but decided to not press the issue when she said I had "a little bit of AIDS" and it would clear up soon. Didn't tell me grandma, queer was hard enough for her.

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

Offline denb45

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Back in 86 87 when I found out I was POZ, I told everyone about it, I wasn't prepared for the overwhelming support I received back then form family members, co-workers, friends, male & female, in a way I'm glad I did, I look @ it this way, by the time I started Meds, and got sick, (and I did get SICK) at least they would know the real-truth, it was hard back then, you just had to be there, today things are even better  ;)
« Last Edit: March 18, 2011, 12:24:07 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline drewm

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Probably the toughest disclosure I made was to my 91 year old Granndmother. While there will be considerable argument about the necessity of this, let me say this. She knew I was in the hospital and was sick. She also knew I had NEVER been hospitalized in my life up until that time. She had also noticed my weight loss so my brothers, Mom and I decided it was best to tell her.

The reaction was surprising. She handled it very, very well and was better educated than I could have imagined. She asked a LOT of questions but grasped what I was telling her.

At the end of an early conversation with her about the disease, she said "stay safe honey" and then chuckled a bit and said, "I guess it's a little late for that." She has been supportive, helpful and compassionate. I really debated hard over whether or not to disclose this to her but now am glad I did.
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline hartiepie

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As someone pointed out, you'll get a skewed view with answers from this forum since I would imagine many of the non-disclosers won't post. I rarely do though I read them all the time.

I've been positive for almost twenty years and I have told very few people (my best friend, my sexual partners) and that's it. No family, no acquaintances, no mail room clerk.

I have a career and I need to work. Despite all the wonderful "breath of fresh air" stories people have, there is still a lot of prejudice out there. About ten years ago, a loose-lipped nurse from the clinic told a work associate my diagnosis ("He has AIDS" --which was not true, POZ but not AIDS). After that, I couldn't get work anywhere.

I moved to another city and will not risk again having no work.

It's truly a good thing to be able to disclose and I am glad some choose to do it. I have NO desire to be a poster boy for disclosing. I've never been able to shake off the "he's the gay one" label, and I really, really doubt HIV would be any easier for people in my field to ignore.

Other POZ people i know always encourage disclosure as a way of liberation and I don't doubt that. I also note to a person, they all are retired or on disability. Nothing will make someone conservative like having to conserve something.

Good luck! I am crawling back into the woodwork again.
« Last Edit: March 18, 2011, 12:52:15 PM by hartiepie »

Offline Gio

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I have contemplated on that question about disclosing or just keeping it to myself.  At the moment only 3 people in my life know.  That is my doctor and 2 best friends.  Since both of my best friends are pos, i needed the support and the encouragement as well as the education.  At every step and every question i had they were able to answer.  As far as telling anyone else its going to be a case by case basis not everyone can be trusted or handle it

Offline denb45

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As someone pointed out, you'll get a skewed view with answers from this forum since I would imagine many of the non-disclosers won't post. I rarely do though I read them all the time.

I've been positive for almost twenty years and I have told very few people (my best friend, my sexual partners) and that's it. No family, no acquaintances, no mail room clerk.

I have a career and I need to work. Despite all the wonderful "breath of fresh air" stories people have, there is still a lot of prejudice out there. About ten years ago, a loose-lipped nurse from the clinic told a work associate my diagnosis ("He has AIDS" --which was not true, POZ but not AIDS). After that, I couldn't get work anywhere.

I moved to another city and will not risk again having no work.

It's truly a good thing to be able to disclose and I am glad some choose to do it. I have NO desire to be a poster boy for disclosing. I've never been able to shake off the "he's the gay one" label, and I really, really doubt HIV would be any easier for people in my field to ignore.

Other POZ people i know always encourage disclosure as a way of liberation and I don't doubt that. I also note to a person, they all are retired or on disability. Nothing will make someone conservative like having to conserve something.

Good luck! I am crawling back into the woodwork again.


 If what your saying is really true, so did u actually hear them say this? , I do not believe that a professional Nurse-RN would do such a thing, where u @ an AIDS clinic, my other half use to do this for a living for many many yrs.  :-\
« Last Edit: March 18, 2011, 01:24:14 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Joe K

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I think it is important to remember that there are many levels of disclosure and ultimately only you can decide on where, how and to whom to disclose. Just because it may not be wise, to disclose your status at work, does not mean that you cannot disclose in other aspects of your life. What works for others, really does not matter, because they are not you, nor do they know your friends, family, etc.. That is why I maintain that disclosure seems to be easiest when you take it one situation at a time.

With that being said, I also want to add the perspective of a parent. For me, the thought that my daughter would not come to me, in times of great need, would just break my heart. You are the result of your parents union and their primary goal in life, is to see you safe and hopefully happy. We are much stronger than you could ever imagine and while we may take the news badly, the vast majority of parents come around and they can provide unconditional love, because that is what parents do.

I also caution about second guessing the motives or abilities of people you choose to tell. Please do not make the mistake of assuming that folks are not strong enough, or that there are not people who will stand by you, no matter what, if only you would give them a chance. When you decide to hide a "part" of you, it will eventually become apparent to those who really know you. Also, do not be surprised if some folks become angry with you, for not disclosing sooner, because that can be seen as your underestimating that person.

Trust me, people who really matter, love you for who you are, not for what disease you have. You are the same person today that you were prior to infection. The ONLY difference now is that you are poz. If they stood by you up until now, being poz will not turn them away and generally will bring you all closer. I know disclosure can be very hard, so take your time, do not let anyone pressure you, but really think about the reasons you use, on deciding who to tell.

The people who matter in your life, are your most precious gifts. They love you, so please do not deprive them of the opportunity, to do what they do best and that is to love you unconditionally.
« Last Edit: March 18, 2011, 02:36:16 PM by killfoile »

Offline hope_for_a_cure

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Trust me, people who really matter, love you for who you are, not for what disease you have. You are the same person today that you were prior to infection. The ONLY difference now is that you are poz.

The people who matter in your life, are your most precious gifts. They love you, so please do not deprive them of the opportunity, to do what they do best and that is to love you unconditionally.

These statements are so very true. 

Offline NycJoe

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I will never disclose in my work life.  I work at a major hospital in Manhattan and you would not believe the things co-workers say about HIV patients.  They know better, they are educated, but does not seem to matter.  My PCP told me not to disclose at work when I began my new career last year and she was right on the mark.  Yes there are many who are cool with it.  But the amount that are not, especially with medical professionals is suprising.  Yes they might treat you well to your face, but damn when they come around the corner and say shit like..omg watch out for this one hes got AIDS blah blah blah.  Often times I correct them but can only say so much.  Yes, even here in NYC.

Offline woodshere

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I have disclosed in discussion to a few good friends, my mom and any trick that might happen.  However in actions I have disclosed to countless people. Spoken to some groups on HIV and disclosed through the course of the presentation.  While my A4A profile lists nothing regarding sex, my comments definitely lead one to believe I am poz.  I do the Aids LifeCylce in CA every year and am always wearing an I'm Positive t-shirt or hat.  It such a freeing experience.  Each year I come home thinking this is the year I am going to really come out of the HIV closet but hold back when I give it some thought.  All my one on one disclosures have been great, often times after disclosing I wonder why I did it.  Sometimes the significance is much like what are we are having for dinner.  It didn't change the way they felt about me in any way.

I do now try to disclose to some specific people on the anniversary of my diagnosis or World AIDS Day.  When Anita Bryant took her hateful campaign to California and Harvey Milk was leading the opposition he said something to the effect that when someone knows someone who is gay it becomes much more personal and people think differently.  That is kind of the way I think it is about telling people your are HIV+, it helps end the stigma.
« Last Edit: March 18, 2011, 06:24:48 PM by woodshere »
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline drewm

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I really appreciate reading all of the different opinions regarding disclosure. It has helped me wrap my brain around issues that are perhaps not at the forefront of thought in my current situation. As a lot of you have so poignantly stated there is still a lot of ignorance about this disease and, unfortunately, there are those who would use "our" disclosure as a weapon against us...as if we need another one (right?).
Diagnosed in  May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

ATRIPLA - VALTREX -  FLUOXETINE - FENOFIBRATE


Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Offline tednlou2

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I can attest that there are some medical professionals who are less than professional.  My partner's sister is an RN.  She got stuck with a needle from someone known to be poz with a high viral load.  She went on PEP, got sick on it, and had to take a few weeks leave.  She was telling me all about the meds.  I was just about to tell her that I was poz, but I didn't.  Instead, I played dumb about PEP and the meds--which really wasn't much of a stretch..lol.  I thought if she did test poz, I would tell her.  I thought it would be nice to have someone in the family who was also poz.  I mean, I'm glad she tested neg.   

Anyway and back to the point, she said her co-workers began treating her differently--the other RN's.  She said she believed they thought she was poz, since she took that leave.  She told me many of them were very ignorant and would make bad comments when someone with HIV came in--which isn't everyday, so I'm not sure how many she has seen do that.  I was glad to see my partner's family didn't seem concerned about the possibility that she may be poz.  Obviously, they were concerned and hoping she wasn't.  But, they still ate and drank after her.  I realize that is different than actually hearing she was poz, instead of could be infected.  I wondered, if she tested poz whether she would have told everyone.  She said she tested neg after everyone asked.  I have no reason to doubt her.  She seems like the type who would tell everyone.  And, it may be easier for many to dislcose, if you got HIV through an occupational accident or blood transfusion.       

Offline wolfter

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My first major disclosure had nothing to do with choice.  At the age of 36, in 2001 I had my first myocardial infarction due to CMV disease.  This occurred on a Friday and when I returned to work on Monday my manager ordered me to go to the hospital since I had a nice gray complexion.  She had a coworker take me because she knew there was something wrong.  My heart enzyme test showed that I did have a heart attack and I was placed in a dual room and my coworker waited with me until the cardiologist came to speak with me.  This stupid ass cardiologist walks in and speaks of the CMV and indicates that people with HIV are at greatest risk of being affected by this virus.  I heard the people on the other side of the curtain gasp while my coworker had the look of horror.  I previously worked at this hospital and Bill had worked there close to 20 years and my diagnosis spread like crazy.  I hadn't intended to speak of the company I worked for, but F*** them.  Verizon Wireless showed no compassion even though I routinely rec'd awards for performance and I was fired October 1st of that year for poor performance.  My DM mentioned that if I fought them, that my entire "history" would become public knowledge.  Looking back, I was so weak and should have used that opportunity to fight but was so afraid that I put my tail between my legs and moved on. 
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline ARMANDO

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i've lived with this disease for over 22 yrs and i have only disclosed to my family and they literally treat me like a distant cousin.i never told any of my friends and at this i don't see any point in telling them!!i do  see my life as ONE BIG LIE!! and it never seems to end

Offline CaptCarl

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               When Anita Bryant took her hateful campaign to California and Harvey Milk was leading the opposition he said something to the effect that when someone knows someone who is gay it becomes much more personal and people think differently.  That is kind of the way I think it is about telling people your are HIV+, it helps end the stigma.

This is exactly how I feel about both being gay and HIV+, and as a result am not exactly in the closet about either. Though I don't talk about either subject endlessly either, I don't feel the need to hide it. The responses have been 90% positive (no pun intended). Enough to make up for the 10% of douchebags that just have to be assholes no matter the circumstances.

CaptCarl
The only thing I can do straight is shoot..

Offline woodshere

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Though I don't talk about either subject endlessly either,

With the people who I have told HIV seldom comes up.  I don't go around with a stamp on my forehead that says HIV+, but at the same time if someone were to ask or it came up in a conversation I wouldn't lie about it.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline denb45

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With the people who I have told HIV seldom comes up.  I don't go around with a stamp on my forehead that says HIV+, but at the same time if someone were to ask or it came up in a conversation I wouldn't lie about it.

Well, I don't have a stamp of HIV/AIDS, I just have a little lipo and wasting in my face  ;D
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline eric48

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Hi,

Back to the OP and bypassing some of the interesting answers (I'm back from trip and have a lot to catch up), here his my take.

The whys and why nots are for every one to evaluate case to case. My policy was, in one way, designed based on a thread in this forum, that was questioning

"wouldn't it be easier if I had been dxd with cancer...?".

We have a friend (an ex-bf) who did not want his friends (us) to know he was going thru cancer, but we were told (there is always someone leaking 'sensational' news...), and I think he appreciates the support he now gets from us.
He actually 'cured' his cancer in a remarkable and speedy fashion that has left doctors surprised....
(he actually gets more attention than I do ...).

My policy is NON disclosure. Period.

I am not an advocate for one or the other. I am not going into the pros and cons.
This is just a testimony and share of tips.

Some people have strong opinion and sometimes forget that some people have family/business/health/etc. situation where NON disclosure is a better option than disclosure.
Not that is a better policy for everyone, non-disclosure is still the ONLY viable policy for some individuals (think of Apple CEO Steve Jobs). I am one of them.

Some people need to know, obviously, docs, etc...

I do need a pressure release valve. Admittedly

Here below my tricks:

A - this forum (as source of information as well as shout box)
B - regular visits to my (now retired) family doctor have helped a lot. A shrink or a specialist would help, I must admit, but I've got no time and it is difficult for me to find people I can connect with.
C - I have announced a much more easy-to-swallow 'condition' that most people have at my age and helps explain the pill box and regular medical appointments. I can easily talk about (my) treatment success and (my) thanks to the medical/Research community, (my) good 'labs' etc.

A , B and especially C have worked marvels for me.

Is is enough ? I guess you'll have the answer when I stop posting here (which, I doubt, though...)  LOL

"wouldn't it be easier if I had been dxd with cancer ?"

- physically and medically, I'd say I prefer my new condition to cancer, for example
- psychologically, I was extremely shocked (being part of the 'older' generation) and reckon it is NOT a disease that is easy to cope with (on an emotional level).

It is medically relevant to be able to cope with the psychological disorder it brings into one's life? I suppose so.

But there has been no scientific evidence that either policy (TOTAL non disclure vs partial, vs disclosure) has an impact on VL, CD4s and other markers of the condition and recovery...

And, after, all... we (almost) don't do body counts (any more...) (*), but we do other counts, they are the ones that COUNT ...

(*) : this is not really true, I know..., I merely used this as a reference the the iraq bodycount and the web site they had and Gen. Tommy Franks' statement (quite offensive, IMHO) ...
I mean no offense to any one here.

Cheers

Eric
NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline scottish

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i am with eric on this one...18yrs poz and i have never told a soul. not a living soul....my hubby is poz his family knows and they know about me too....thats it. not even my gp...dont go there anyway...just my clinic. i dont want to seem patronosing but im pretty sure it would be easier if like many of you i knew other poz people...but no way would anyone admit to this...like eric to discuise me hubby's hospital visits and weight loss we invented a spinal problem...so disability and lots of oohhh and ahh's poor wee soul comes from friends and family.....for my body shape change i invented...stomach ulcers and need to watch what i eat and bloating etc....(quite a good one i thought) our meds are hidden in the house just incase of a flying visit by someone....but until i step in that hospital door every three months and i know they know.....i am "NORMAL"........................sure you may all think this is very sad....but its my way of coping...my city is not nyc...but glasgow.....which means if your a guy your gay..if your a woman you must be a junkie or a whore......................of which i am none of the above..uk is a long way from nyc and the open minds of some americans ...we are a small island with very small minds!!! my clinic is fab and never a soul steps in when we are with the doc...not a name on a single document just a code......absolutey anonomous...and the clinic is run together with other inf diseases so you dont know whos got what...i see allways the same doc .....and i look at him as my saviour and my gardian of my awful secret.  this is the only forum i have joined and its for the information available and there are also some lovely people ...the fact you are all so far away is even better. i would die if i met my doc or someone from the clinic in the street  if i was with someone else....and they know that. i appreciate the complete privacy.

Offline mecch

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  • red pill? or blue pill?
i've lived with this disease for over 22 yrs and i have only disclosed to my family and they literally treat me like a distant cousin.i never told any of my friends and at this i don't see any point in telling them!!i do  see my life as ONE BIG LIE!! and it never seems to end
Gee that is sad. Maybe your friends would treat you better than your family. I bet they would! After all they are you friends and had a choice about loving and supporting you. HIV is just another part of you.  They like you for who you are and not out of any obligation. 

I only say maybe if you feel that you are living a big lie, your friends could be the way out.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mecch

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  • red pill? or blue pill?
not even my gp...dont go there anyway...just my clinic.

If you don't go to your gp, and haven't told him/her you are hiv+, what is the point in considering this person still your doctor. 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline mbpoz6

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I haven't told anyone and I don't think I ever will, until Im on my death bed or I'm cured/functionally cured.

Offline wolfter

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We all bring such baggage into this discussion that there's bound to be a diverse range of feelings.  Individual growth is a true treasure.  What works for one won't dictate what others should do.  I only told out of necessity and never wanted my family to know.  This was wrapped up in a lot of beliefs and actions I was raised with.  Even though my entire family now knows, we don't discuss it as a topic and I'm personally comfortable with that.  I used to get annoyed when my mum asked me if I took my pills or my siblings asked if I felt well enough to do something.  It showed they truly cared and they might not agree with my lifestyle, but they are trying.  I gave them that opportunity.

I truly thought I came from a family that this would be the most horrific thing they'd ever have to deal with.  What I found was that I had a family I had hidden from for years because of my fears, not theirs.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline spacebarsux

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Thanks for your thoughts everyone. I guess everyone's situation/ circumstances are unique and no one but them can decide whom to disclose, when and for what reason. I can relate in one way or another with the reasons given by almost every single person here.
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 chocaholic

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i havent disclosed to my family in the 5 years since diagnosis.  i dont want them feeling sorry for me or whatever. i dont see how my disclosing will help me in any way

Offline woodshere

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i havent disclosed to my family in the 5 years since diagnosis.  i dont want them feeling sorry for me or whatever. i dont see how my disclosing will help me in any way

One of the main reasons I disclosed to my mom is because I wanted to control how she found out.  I thought it would be better to hear it from me instead of finding out if I got sick, had to go to the hospital for some reason or I died unexpectedly and she found all the meds and HIV stuff at my home. Just something to think about.

BTW, I waited about 1 1/2 years before telling, she got mad at me for not telling her sooner.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Online Miss Philicia

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i havent disclosed to my family in the 5 years since diagnosis.  i dont want them feeling sorry for me or whatever. i dont see how my disclosing will help me in any way

Studies have shown depression with HIV patients to be 12 times higher than the general population.  They also show depressive symptoms increase risk of HIV disease progression.  In turn they also show that support from family via HIV disclosure to lower depression.
"I’ve slept with enough men to know that I’m not gay"

Offline woodshere

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  In turn they also show that support from family via HIV disclosure to lower depression.

Personally speaking, yeah it does!
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline PozJeepGuy

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I have to say how stunned i am by everyones replies.  When we stop hiding and stop being ashamed then we can move forward.  I found out 8 months ago and since then I made the decision I'm not going to be ashamed of this.  Granted the way one contracts this might go to that mentality.  For me getting it from a cheating ex I feel I did nothing wrong and I will not be ashamed. I have told my employer, my family, and my friends.  I have my on line profile (gay website) with my pic and HIV status listed. 

If we keep hiding and be afraid of peoples reaction it will just keep the whole aspect of (dirty) with HIV.  In my short time of dealing with all this I have found the worst reaction has been in my own head.  I'm tired of being upset and I'm not going to complicate all this with who I will tell and who I won't tell. 

Change starts with each of us..

Best of luck man.
Jacob Perry

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

Offline thunter34

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Granted the way one contracts this might go to that mentality.  For me getting it from a cheating ex I feel I did nothing wrong and I will not be ashamed.

I got mine because I took load after load after load up my rump.  Did I do something wrong?
AIDS isn't for sissies.

Offline PozJeepGuy

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If any one contracts this in this day and time from having unprotected sex it is our own fault.  Those who contracted this before the knowledge was out that is a little different.  I feel even with the way I contracted this is still my own fault.  Having unprotected sex is a choice that we make.  There for if you choose to not use protection yes it is your own fault. This is just my personal belief on the subject. 
Jacob Perry

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

Offline skeebo1969

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If any one contracts this in this day and time from having unprotected sex it is our own fault.  Those who contracted this before the knowledge was out that is a little different.  I feel even with the way I contracted this is still my own fault.  Having unprotected sex is a choice that we make.  There for if you choose to not use protection yes it is your own fault. This is just my personal belief on the subject. 

No arguement here, I agree.
I despise the song Love is in the Air, you should too.

Offline thunter34

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  • His name is Carl.
If any one contracts this in this day and time from having unprotected sex it is our own fault.  Those who contracted this before the knowledge was out that is a little different.  I feel even with the way I contracted this is still my own fault.  Having unprotected sex is a choice that we make.  There for if you choose to not use protection yes it is your own fault. This is just my personal belief on the subject. 

Then in that case, you did in fact do something "wrong".
AIDS isn't for sissies.

Offline skeebo1969

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Then in that case, you did in fact do something "wrong".

Yup, corrected that technicality in his next post.
I despise the song Love is in the Air, you should too.

Offline Joe K

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I got mine because I took load after load after load up my rump.  Did I do something wrong?

Define what you mean by "wrong".  Seriously, I think this idea of HIV as being dirty or a scourge from on high, is what makes disclosure so hard. If you insist on accepting that you are somehow "unworthy", due to being poz, then the issue lies squarely with you. Nobody can make you feel inferior without your consent. I realize there are very valid reasons for not disclosing your status, but feeling like you are "unclean" should not be one of them. This type of thinking can be very damaging, as it promotes feelings of being "broken" and that by being so, you are doomed to a life devoid of love and happiness.

I think the most important part of disclosure is what you believe yourself. I cannot control what others think, do or say. I can however, change if or how I react to such challenges. I know I am not broken, nor unclean and nobody will every convince me otherwise. Sometimes the power you seek, lies within you.

Offline woodshere

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  • ain't no shame in my game
If any one contracts this in this day and time from having unprotected sex it is our own fault.  Those who contracted this before the knowledge was out that is a little different.  I feel even with the way I contracted this is still my own fault.  Having unprotected sex is a choice that we make.  There for if you choose to not use protection yes it is your own fault. This is just my personal belief on the subject. 

I agree with much of what you said...except
.... I feel I did nothing wrong....

saying that is much like classifying some as innocent victims.  To me it only stigmatizes this virus more.

I think it is important to share our status with some people. However there is a difference in hiding/lying about being poz and just not telling some people.  I for one was advised not to disclose to my employer by the staff of Legal Aid that deals with HIV issues.  It is illegal to fire someone for being HIV+, but we all know there are ways around this.
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

 


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