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Author Topic: How out about HIV to be?  (Read 7006 times)

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Offline foxes

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  • Posts: 16
How out about HIV to be?
« on: September 02, 2012, 10:20:04 PM »
Hi all,

Wondering about people's experiences with being out vs in the closet about one's HIV status... who did you tell, who did you not tell, who do you wish you hadn't? ;-)

Offline WillyWump

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Re: How out about HIV to be?
« Reply #1 on: September 03, 2012, 12:13:53 AM »
I told my mom as I was leaving the docs office. I told my aunt shortly thereafter. Other than that only 2 or 3 other people know, other than the peeps on here.

I would love to be that person who can go around wearing the shirt that says "positive", but it's just not me.  But at the same time If anyone were to ask I wouldnt have a problem telling them.

It's an individual choice as to how "out" you want to be.

-W
« Last Edit: September 03, 2012, 12:15:27 AM by WillyWump »
POZ since '08

Last Labs-
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Current Meds: Prezista/Epzicom/ Norvir
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Offline Common_ground

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Re: How out about HIV to be?
« Reply #2 on: September 03, 2012, 12:47:06 AM »
I only told a few as well. Its nothing I really think about and I dont have the urge to tell others or to keep it hidden. If I could make a difference for someone else then I would "stand up" and reveal my status but as for now HIV is not something I feel closeted about, its just there, kind of.
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline foxes

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Re: How out about HIV to be?
« Reply #3 on: September 03, 2012, 05:18:52 AM »
Right now, when I'm around my close friends, I feel like I'm keeping a secret from them. Perhaps that will pass.

Offline Pricho01

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Re: How out about HIV to be?
« Reply #4 on: September 03, 2012, 05:59:52 AM »
I've told all the important people in my life - personal decision.... ummm I also think there is this enormous silence around HIV... I know Dec 1 is WAD but here in Australia there is not a lot of discussion around it....

People are left with the 80's death slasher ad campaign (not sure if that happened anywhere else?) so I like to think sometimes being a tad more vocal can help to educate...so I tend to talk about it and be a bit more open than before...this has it's ups and downs...more ups though!

If they are close friends and really care they will hang around and still care about you....this I know from personal experience....there are those that will disappear into the woods too.... "balance" is the key I think.....
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline jimbalaya

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Re: How out about HIV to be?
« Reply #5 on: September 03, 2012, 01:42:05 PM »
Right now, when I'm around my close friends, I feel like I'm keeping a secret from them. Perhaps that will pass.

I feel the same way....when I first tested positive (May 2012) I thought I wouldn't tell anyone...now I'm starting to feel guilty for not telling my parents, and really close friends...I feel like I'm hiding it from them...and when I have good hiv related news---after 6 weeks on meds I'm almost UD---I don't really have anyone to share it with...except my partner.   

I think I'm getting closer to telling my parents at least.  I had an uncle who had AIDS and he passed away last summer, so that's partly why I don't want to tell my mom because she associates HIV/AIDS with her brother dying......ugh.....we'll see.


Offline Rockin

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Re: How out about HIV to be?
« Reply #6 on: September 03, 2012, 03:57:34 PM »
I never told any of my close friends, gay or straight. And if I had to tell someone, I would not tell my gay friends at all...I think they would definitely change around me, even unconsciously.

My mom and my dad found out one week after the other for different reasons...to say I was baffled is an understatement. Up to that point only my doctors knew.

Once I had to talk to them about it, let's just say shit got really really real for me.

But if I had an option I wouldn't want them finding it out, even though they were very warm and supportive. It's a constant worry for them on top of everything else. They feel it's unfair that this happened to their son...it's a pain I would never wish on neither of them. 

Offline Pricho01

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Re: How out about HIV to be?
« Reply #7 on: September 03, 2012, 08:53:05 PM »
I never told any of my close friends, gay or straight. And if I had to tell someone, I would not tell my gay friends at all...I think they would definitely change around me, even unconsciously.

My mom and my dad found out one week after the other for different reasons...to say I was baffled is an understatement. Up to that point only my doctors knew.

Once I had to talk to them about it, let's just say shit got really really real for me.

But if I had an option I wouldn't want them finding it out, even though they were very warm and supportive. It's a constant worry for them on top of everything else. They feel it's unfair that this happened to their son...it's a pain I would never wish on neither of them.

What if you had cancer? Would you tell them?

What if you got really sick or god forbid died from an AIDS defining illness and you hadn't told them?

I think they may feel that you didn't allow them the opportunity to support you.... I am saying this with real warmth not being mean - but my sister had cancer and if she had not told me or my parents we would have been upset....

Sometimes you have to step back and not let "your" fear dictate terms....its easy to forecast disaster and project your fear on to others but remember everyone is different.... no one can foretell the future or really know how someone will feel.... or what they will do....

And really whats the worst that can happen? I think that yes my parents had an extra worry, but my mum actually told me she would rather know than be kept in the dark.... just my own opinion... beat the fear if you can...
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline jimbalaya

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Re: How out about HIV to be?
« Reply #8 on: September 03, 2012, 09:19:47 PM »


What if you got really sick or god forbid died from an AIDS defining illness and you hadn't told them?
..

This is what I think about...I want to stay really close to my family, and keeping such a large thing secret doesn't feel right...as hard as it will be to tell them, I know that I need to...it wouldn't be fair for them to find out any other way besides from me.   


Offline foxes

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Re: How out about HIV to be?
« Reply #9 on: September 04, 2012, 05:50:36 PM »
Had a really good conversation with my psychologist today and got clearer about where I'm at... I'm still adjusting to the news and everything, and taking things one step at a time.

I don't have to know right now who I will and won't tell in the future... for any particular person I just have to know if I'm feeling ready or if the answer is "not now". When I'm ready to talk about it with a person, my body will let me know. I know the difference between what "ready" and "not ready" feels like.

It's also good not to tell any of my friends yet because I'm not in a position where I can do any caregiving for any difficult feelings that might come up for them. It's enough to take care of myself right now. When I'm feeling more fine about it, more in acceptance, more settled... then I'll be able to tell people if I want, and deal with whatever results from that. Right now, if someone had a bad reaction it could be more difficult for me to deal with than I want.

Offline Pricho01

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Re: How out about HIV to be?
« Reply #10 on: September 05, 2012, 12:13:18 AM »
Right now, if someone had a bad reaction it could be more difficult for me to deal with than I want.

Good call! Your psych knows your state of mind best... good luck!
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline RWR

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Re: How out about HIV to be?
« Reply #11 on: September 05, 2012, 12:51:31 AM »
When i first found out my Mom and Dad was ok.  My brother disowned them for being close to me. My Dad is dead and my brother still stays away. Have told long term lady buddy when asked and She never called me again. I live in a retirement community in Arizona and Neighbors are constantly telling me how they can make people leave they do not want to be here. I keep my head low.
Hiv+ 1986
Isentress
Truvada

Bobby

Offline mecch

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  • red pill? or blue pill?
Re: How out about HIV to be?
« Reply #12 on: September 05, 2012, 01:12:07 AM »
Had a really good conversation with my psychologist today and got clearer about where I'm at... I'm still adjusting to the news and everything, and taking things one step at a time.

I don't have to know right now who I will and won't tell in the future... for any particular person I just have to know if I'm feeling ready or if the answer is "not now". When I'm ready to talk about it with a person, my body will let me know. I know the difference between what "ready" and "not ready" feels like.

It's also good not to tell any of my friends yet because I'm not in a position where I can do any caregiving for any difficult feelings that might come up for them. It's enough to take care of myself right now. When I'm feeling more fine about it, more in acceptance, more settled... then I'll be able to tell people if I want, and deal with whatever results from that. Right now, if someone had a bad reaction it could be more difficult for me to deal with than I want.

That all sounds level-headed and reasonable and self-protective. Bravo.  Take you sweet ass time with disclosure. Do what's best for you.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Jmarksto

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Re: How out about HIV to be?
« Reply #13 on: September 05, 2012, 02:26:53 AM »
Take you sweet ass time with disclosure. Do what's best for you.

This is great discussion - I do think about the disclosure issue a fair amount.  There are a few comments form others that stand out for me - One I think was Rockin  in another thread that noted that disclosure is done when I may be at risk of infecting you, or I need your support - that makes sense to me.  On the other hand is a comment from my therapist that has noted that secrets from loved ones create anxiety. 

My thinking right now is that this is too new for me and I am not ready to tell anyone except my significant other  - who has been so supportive and loving, I feel very fortunate.

I am going to take my sweet ass time - even with loved ones.

Thanks to all for their thoughts and comments,
JM
03/15/12 Negative
06/15/12 Positive
07/11/12 CD4 790          VL 4,000
08/06/12 CD4 816/38%   VL 49,300
08/20/12 Started Complera
11/06/12 CD4   819/41% VL 38
02/11/13 CD4   935/41% VL UD
06/06/13 CD4   816/41% VL UD
10/28/13 CD4 1131/45%  VL 25
02/25/14 CD4   792/37%  VL UD

Offline Common_ground

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Re: How out about HIV to be?
« Reply #14 on: September 05, 2012, 06:05:05 AM »
I dont know if we got any Buddhist´s here on the board but me myself I share many Buddhist beliefs and regularly goes to local temples here although I do consider myself a mix of Atheist/Chistian/Buddhist .

I see it two ways.

You have a duty or obligation to tell the ones close to you, you feel guilt for not speaking the truth and you want to ease your own mind (A mainly Christian view). In contrast to this you might also burden loved ones for bringing sorrow into their lives by giving them bad news and its wrong of you to tell others since its your own problem. (Buddhist).

Since I been living half my adult life in a Christian country and half in a Buddhist country Im often torn between these types of beliefs in many situations.

Its mind bending, disclosure being a done deal once its out, makes it even heavier. 
« Last Edit: September 05, 2012, 06:20:09 AM by Common_ground »
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline spacebarsux

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  • Survival of the Fittest
Re: How out about HIV to be?
« Reply #15 on: September 05, 2012, 01:04:02 PM »
I dont know if we got any Buddhist´s here on the board but me myself I share many Buddhist beliefs

Heh.  :P

Well I'm traditionally Hindu but I find appeal in many of Buddha's teachings. I kinda see Hinduism and Buddhism as part and parcel of the same belief system with many important overlapping philosophies (Karma for example) and views- though some diverge.  I'm mostly agnostic anyway but have sporadic spurts of feeling spiritual.


Its mind bending, disclosure being a done deal once its out, makes it even heavier. 

Yep, once it is out you can't take it back. Unless of course you lie, which pretty much violates all religions Ha!  ;)

PS- I was never a good adherent of the Middle Path.
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 Rockin

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Re: How out about HIV to be?
« Reply #16 on: September 06, 2012, 12:13:10 AM »
What if you had cancer? Would you tell them?

What if you got really sick or god forbid died from an AIDS defining illness and you hadn't told them?

I think they may feel that you didn't allow them the opportunity to support you.... I am saying this with real warmth not being mean - but my sister had cancer and if she had not told me or my parents we would have been upset....

Sometimes you have to step back and not let "your" fear dictate terms....its easy to forecast disaster and project your fear on to others but remember everyone is different.... no one can foretell the future or really know how someone will feel.... or what they will do....

And really whats the worst that can happen? I think that yes my parents had an extra worry, but my mum actually told me she would rather know than be kept in the dark.... just my own opinion... beat the fear if you can...

You are right, of course. But I always feel the need to be tough and handle it all by myself, regardless of the gravity of the problem. The whole "I don't need your pity or your sympathy" speech, you know?. I think this works better for me...if I worry my family I feel incredibly guilty and I hate feeling guilty.

Offline Rockin

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Re: How out about HIV to be?
« Reply #17 on: September 06, 2012, 12:16:21 AM »
When i first found out my Mom and Dad was ok.  My brother disowned them for being close to me. My Dad is dead and my brother still stays away. Have told long term lady buddy when asked and She never called me again. I live in a retirement community in Arizona and Neighbors are constantly telling me how they can make people leave they do not want to be here. I keep my head low.

Sorry to hear this RWR. People can be shitty and we all know pretty well how unfair life can be sometimes.

Offline RWR

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Re: How out about HIV to be?
« Reply #18 on: September 06, 2012, 11:28:32 AM »
Thanks Rockin,  Thru the years i wish my family had never known.  I was made to eat at separate  tables. I was made to eat off plastic and paper.  I was asked to go to an aids organization called shanti for the holidays one year because they did not want my siblings to be uncomfortable.  To this day my Sister still gets drunk and going to out me so more. I was raised not to lie so i have trouble when asked a direct question by people about my condition.  I am sure families are different now.
Hiv+ 1986
Isentress
Truvada

Bobby

Offline phildinftlaudy

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  • sweet Ann what you think babe...
Re: How out about HIV to be?
« Reply #19 on: September 06, 2012, 11:57:21 AM »
I told my parents and brothers/sister immediately after finding out.

I told my friends shortly after.

I told my employer when I was filling out the paperwork after I got hired - as one of the papers was related to Americans w/ Disabilities Act and asked if I had any type of medical condition (physical and/or mental) which might require reasonable accommodations. Even though, I don't currently require extraordinary, yet reasonable accommodations, I felt it important to let them know so that if I did need some type of accommodation in the future (other than the current accommodations of being able to have leave time to get labs and follow up done) it would be on record.

While I only had to let Human Resources know, I chose to also let my supervisor know. This was so that she would understand why I request leave time every three months (for labs/dr) and why I might take a day off when slightly ill (as I don't always have the luxury of taking a chance that a cold/illness might become something more).

My immediate coworkers also know. I don't share it with everyone at my place of employment (as there are over 5,000 employees) - but wouldn't have a major issue with informing them - and if it were to come up in conversation, I don't shy away from appropriately sharing it.

Same in regards to "outside" people - if it seems appropriate to share, then I do - otherwise, I don't (but not out of fear or shame, but simply because there are varying levels of things that get shared depending on the interaction one has with someone and/or the setting, reason behind sharing).

The only reason I don't put things directly related to my status on my Facebook page is out of respect for my mother - she worries that some of the relatives that are on FB would treat her differently if they knew..... As for me, if it weren't for being respectful to her feelings (fears), I wouldn't have a problem w/ disclosing it pretty much anywhere (with the exception of a redneck bar  :D )

At least for me (and everyone is, of course, different), being for the most part "out" with my status, is just one less piece of luggage that I have to carry around with me. I find that for most things, if I am okay with it and have gotten to the point of acceptance, then it really doesn't matter what someone else thinks - that is their issue, not mine. Now, if I am not okay/accepting of something - then it usually follows that I take issue with someone else's issues....

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 LiveWithIt

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Re: How out about HIV to be?
« Reply #20 on: September 06, 2012, 12:50:35 PM »
I think I've only told one friend and that was after figuring out he was probably poz too.  I had another friend who was very out about his poz status even online, but I never told him.

You have to figure out who to trust on your own.

Other than that only people in the medical fields and poz support groups know.
Pray God you can cope
I know you have a little life in you yet.
I know you have a lot of strength left.

Offline phost86

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Re: How out about HIV to be?
« Reply #21 on: September 06, 2012, 05:41:13 PM »
My former partner knows as well as a few friends and my manager at my job knows also. I wish I was out to more friends. There is a collecting group I'm part of. We have events during the year that we all attend. I have become close to a few of the members but I'm not comfortable letting them know.
I recently joined a group for HIV positive people because I want chat about it and connect with other positive people but telling other friends..not there yet.

Offline jimbalaya

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Re: How out about HIV to be?
« Reply #22 on: September 06, 2012, 06:55:39 PM »

I recently joined a group for HIV positive people because I want chat about it and connect with other positive people but telling other friends..not there yet.

My partner and I have been going to a support group for HIV positive folks as well...we meet once a week, and it's been SO nice to make friends who are positive that we can actually talk about stuff with in person...since we aren't quite ready to tell our 'old' friends yet.    :)

Offline Since2005

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Re: How out about HIV to be?
« Reply #23 on: September 08, 2012, 01:46:06 AM »
WOW..... I have finally told my family. Can you believe this?? After hiding this for so many years!!!!. They were all supportive and loved me no matter what. So, I came out with two things at the same time. I told them " I am gay and I am HIV positive". I COULD NOT handle it myself anymore. As some of you might remember - the one and only who have never gone to doc visits after diagnosis after almost for about 7 years. What a relief!!!

I am not as Willey mentioned about - not ready yet to wear “positive” T-shirt but I have thought about it a lot. I have been volunteering for HIV+ related stuff. I know nothing feels any better than this - I am still working on lots of different issues but all I can say I am all about and out, at least getting there. Life can't get any better than after coming out :)

Edited to add: just to clarify... I have come out to my family (not everyone) with both HIV status and sexual orientation a while now:)
« Last Edit: September 08, 2012, 04:03:33 AM by Since2005 »

Offline Common_ground

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Re: How out about HIV to be?
« Reply #24 on: September 08, 2012, 02:41:21 AM »
*Like*
Kudos to you Since! Thats great news, happy for you! Now go have yourself an awesome weekend , you deserve it!
2011 May - Neg.
2012 June CD4:205, 16% VL:2676 Start Truvada/Stocrin
2012 July  CD4:234, 18% VL:88
2012 Sep  CD4:238, 17% VL:UD
2013 Feb  CD4:257, 24% VL:UD -viramune/truvada
2013 May CD4:276, 26% VL:UD

Offline spacebarsux

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  • Survival of the Fittest
Re: How out about HIV to be?
« Reply #25 on: September 08, 2012, 03:00:13 AM »
WOW..... I have finally told my family. Can you believe this?? After hiding this for so many years!!!!. They were all supportive and loved me no matter what. So, I came out with two things at the same time. I told them " I am gay and I am HIV positive". I COULD NOT handle it myself anymore. As some of you might remember - the one and only who have never gone to doc visits after diagnosis after almost for about 7 years. What a relief!!!

I am not as Willey mentioned about - not ready yet to wear “positive” T-shirt but I have thought about it a lot. I have been volunteering for HIV+ related stuff. I know nothing feels any better than this - I am still working on lots of different issues but all I can say I am all about and out, at least getting there. Life can't get any better than after coming out :)

Congratulations and well done Since! I can understand how hard it must have been, but like I'd told you on your thread before, your family will always be there for you.   :)
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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Re: How out about HIV to be?
« Reply #26 on: September 09, 2012, 04:51:40 PM »
Wow Since good for you!  Courage has its rewards enjoy them!
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline phost86

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Re: How out about HIV to be?
« Reply #27 on: September 09, 2012, 08:46:18 PM »
WOW..... I have finally told my family. Can you believe this??

Sounds like you have a strong support group. That means the world. Congrats.

Offline jm1953

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Re: How out about HIV to be?
« Reply #28 on: September 09, 2012, 09:54:57 PM »
Sounds like you have a strong support group. That means the world. Congrats.

Amen!
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline jcelvis

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Re: How out about HIV to be?
« Reply #29 on: September 09, 2012, 10:09:39 PM »
On dating sites and the general gay community I am out about my status. I a couple of my friends are aware, especially my best friend (as she is the individual notified in case of medical emergencies from dr). My family and individuals at work are unaware of my status.

For the gay community, it hasn't been that difficult, it has actually lifted a burden of my shoulders. On a date i use to get anxiety on when to tell an individual about my status. The people who aren't interested just ignore me, and it's probably better that way, so I'm left with people that i can get to know without this "secret" hanging around my neck.

Secondly, after doing that I have found a lot more people who are pos that are not in any community or support group.
Change the way you view the world, and the world around you changes.

Offline littleprince

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Re: How out about HIV to be?
« Reply #30 on: September 10, 2012, 04:27:44 AM »
I'm 'out' to my family. I was so sick when I was diagnosed that I had to tell my mum as I knew I'd need some help just to get by. I told her the day after I was told when I was still in hospital. Since that day she has been my biggest supporter. I'm so great full for everything she has done, and continues to do for me.

I'm actually glad that I was in a position where I was forced to tell her as it was the best thing that could have happened. I've been shown the unconditional love of a mother. I'm still amazed that in all I've put her through I've yet to make her love me any less.

My father and sister and brother in law also know but like our family always does we ignore the elephant in the room. I know they all get updates on my latest doctors visits through mum but at this stage we don't feel comfortable discussing it. Strange, but that's how we are.  I was told that after my last slight illness and ID doctor visit my father didn't eat for a day he was so worried.... maybe I should break the ice and let them know it's ok to talk about it.

I'm not sure what my ramblings mean. I guess that if you have a close, open family there are benefits to disclosing to them. They love you and want to be there for you but for that to happen they need to know what's going on.

Offline Since2005

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Re: How out about HIV to be?
« Reply #31 on: September 10, 2012, 03:55:00 PM »
I don't mean to steal the thread but wanted to thank jm1953, phost86, mecch, spacebarsux, Common_ground for your comments.

Everyones pace is different and its okay. For some, it could take 7 days or it could take 7 years! Come out when you are comfortable on your own terms.
« Last Edit: September 10, 2012, 04:01:34 PM by Since2005 »

Offline Sera

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Re: How out about HIV to be?
« Reply #32 on: September 10, 2012, 08:24:14 PM »
I have told my mother, a cousin, two nieces and one sister, mind you we are a family of seven and i have a 20 year old son. When i told my son, i thought i was doing the right thing because i didn't want him finding out from someone else. But i think it was a big mistake because i think it affected him more than i thought it would. He was a junior in high school then, and soon after he started smoking pot because he couldn't handle it - i only found this out in family couselling when he told the therapist that he was still angry with me for telling him about my hiv.  One day last year, when he was high on pot he told me that i ruined his life and should never have told him. Very painful but i can't take it back.

Two of my nieces and my sister are very supportive, but when i told my cousin - we were very close, i was suprised by her lack of knowledge and ignorance about the disease - she is an international lawyer who works for the united nations, but she thought that people are now being cured of hiv and gave me an example of majic johnson, couldn't believe it. For my mother, who is an evangelical christian and believes in the power of prayer, when i told her, she said "leave everything up to God", not the the response i was expecting and we have not talked about it since.

So, i don't feel encouraged telling people anymore.

Offline nycpoz33

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Re: How out about HIV to be?
« Reply #33 on: September 10, 2012, 10:34:34 PM »
When I was diagnosed earlier this year I immediately informed my employer because I knew I would not be in work for a few days and felt the truth would offer me the best chance of not having the diagnosis adversely affect my employment.  I actually called my boss while sitting at the clinic with the counselor who I tested positive with.  This route worked extremely well for me because it afforded me the time off I needed to deal with the initial shock and emotions as well as complications I was experiencing.  When it came time to file for a FMLA request due to sickness it was immediately approved without hesitation because they knew in advance of my illness.

In terms of my personal "outing" of myself, I chose a very odd yet contemporary way of informing everyone who needed to know; Facebook!  (I can feel the negative comments coming).

Please note that I prepped my Facebook page thoroughly before posting anything relating to my HIV status.  This included ensuring all possible security features were correctly enabled to provide maximum privacy and to thoroughly vet my friends list for undesirables.  Only AFTER this was complete and I checked twice did I post the following quote as a status on my Facebook account...

 "3/12/2012....This is the date I will never forget. It is the day I was diagnosed     with HIV. Im saying this on here so all my friends know the truth, not the eventual rumors that will fly around. Most important though is my hope that each and everyone of you will read this and think about what you are doing and who you are trusting before you make a mistake that cannot be corrected. I have nothing to hide and hope my diagnosis and disclosure will help at least one person to change their behavior before its too late. That will make this post worth putting my business out there."

To this day I dont regret doing this.  I received much love and respect from the vast majority of my friends and family on Facebook.  It cut down on the number of times I had to repeat the "Diagnosis" story as over 100 people were informed of my situation in one fell swoop.

Most of all for me personally, being very open about my status afforded me the luxury of not being chained to my illness or the stigma that can follow it.  I also like to believe I may have impacted someone elses life positively, so-to-speak!

Individually there are many factors one must think of when deciding how "open" to be with their HIV status.  Take the time to think it through before jumping out of the closet.

Offline mecch

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Re: How out about HIV to be?
« Reply #34 on: September 10, 2012, 11:12:01 PM »
I have told my mother, a cousin, two nieces and one sister, mind you we are a family of seven and i have a 20 year old son. When i told my son, i thought i was doing the right thing because i didn't want him finding out from someone else. But i think it was a big mistake because i think it affected him more than i thought it would. He was a junior in high school then, and soon after he started smoking pot because he couldn't handle it - i only found this out in family couselling when he told the therapist that he was still angry with me for telling him about my hiv.  One day last year, when he was high on pot he told me that i ruined his life and should never have told him. Very painful but i can't take it back.

Two of my nieces and my sister are very supportive, but when i told my cousin - we were very close, i was suprised by her lack of knowledge and ignorance about the disease - she is an international lawyer who works for the united nations, but she thought that people are now being cured of hiv and gave me an example of majic johnson, couldn't believe it. For my mother, who is an evangelical christian and believes in the power of prayer, when i told her, she said "leave everything up to God", not the the response i was expecting and we have not talked about it since.

So, i don't feel encouraged telling people anymore.

Eek heavens, what awful experiences you have had with disclosure!  I have a comment on just one person - your son. He was a Jr.  So 16 or 17 years old. And your disclosure "ruined his life"?  I dunno, he's your son so you don't want to hurt him and you want to do what is right.   I think that is a TOTALLY unfair thing for him to have said to you. Take it with a grain of salt, please.  You did NOT ruin his life.  And if you see his smoking dope as a problem, do NOT accept responsibility that the pot smoking is your fault.  Puleaze!  I encourage you to go into any guilt or pain you have about this with your therapist and if your therapist doesn't support you that it was OK to tell a 16 yo about HIV status, then change your therapist.   And besides, the "boy" is 20 now so he should be over it and have "forgiven" your big "sin" of disclosing to him.
« Last Edit: September 10, 2012, 11:14:12 PM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Rockin

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Re: How out about HIV to be?
« Reply #35 on: September 10, 2012, 11:18:00 PM »
When I was diagnosed earlier this year I immediately informed my employer because I knew I would not be in work for a few days and felt the truth would offer me the best chance of not having the diagnosis adversely affect my employment.  I actually called my boss while sitting at the clinic with the counselor who I tested positive with.  This route worked extremely well for me because it afforded me the time off I needed to deal with the initial shock and emotions as well as complications I was experiencing.  When it came time to file for a FMLA request due to sickness it was immediately approved without hesitation because they knew in advance of my illness.

In terms of my personal "outing" of myself, I chose a very odd yet contemporary way of informing everyone who needed to know; Facebook!  (I can feel the negative comments coming).

Please note that I prepped my Facebook page thoroughly before posting anything relating to my HIV status.  This included ensuring all possible security features were correctly enabled to provide maximum privacy and to thoroughly vet my friends list for undesirables.  Only AFTER this was complete and I checked twice did I post the following quote as a status on my Facebook account...

 "3/12/2012....This is the date I will never forget. It is the day I was diagnosed     with HIV. Im saying this on here so all my friends know the truth, not the eventual rumors that will fly around. Most important though is my hope that each and everyone of you will read this and think about what you are doing and who you are trusting before you make a mistake that cannot be corrected. I have nothing to hide and hope my diagnosis and disclosure will help at least one person to change their behavior before its too late. That will make this post worth putting my business out there."

To this day I dont regret doing this.  I received much love and respect from the vast majority of my friends and family on Facebook.  It cut down on the number of times I had to repeat the "Diagnosis" story as over 100 people were informed of my situation in one fell swoop.

Most of all for me personally, being very open about my status afforded me the luxury of not being chained to my illness or the stigma that can follow it.  I also like to believe I may have impacted someone elses life positively, so-to-speak!

Individually there are many factors one must think of when deciding how "open" to be with their HIV status.  Take the time to think it through before jumping out of the closet.

You're my new hero. I cannot even begin to imagine this situation in my own life.

Offline mecch

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Re: How out about HIV to be?
« Reply #36 on: September 11, 2012, 07:27:24 AM »
When I was diagnosed earlier this year I immediately informed my employer because I knew I would not be in work for a few days and felt the truth would offer me the best chance of not having the diagnosis adversely affect my employment.  I actually called my boss while sitting at the clinic with the counselor who I tested positive with.  This route worked extremely well for me because it afforded me the time off I needed to deal with the initial shock and emotions as well as complications I was experiencing.  When it came time to file for a FMLA request due to sickness it was immediately approved without hesitation because they knew in advance of my illness.

In terms of my personal "outing" of myself, I chose a very odd yet contemporary way of informing everyone who needed to know; Facebook!  (I can feel the negative comments coming).

Please note that I prepped my Facebook page thoroughly before posting anything relating to my HIV status.  This included ensuring all possible security features were correctly enabled to provide maximum privacy and to thoroughly vet my friends list for undesirables.  Only AFTER this was complete and I checked twice did I post the following quote as a status on my Facebook account...

 "3/12/2012....This is the date I will never forget. It is the day I was diagnosed     with HIV. Im saying this on here so all my friends know the truth, not the eventual rumors that will fly around. Most important though is my hope that each and everyone of you will read this and think about what you are doing and who you are trusting before you make a mistake that cannot be corrected. I have nothing to hide and hope my diagnosis and disclosure will help at least one person to change their behavior before its too late. That will make this post worth putting my business out there."

To this day I dont regret doing this.  I received much love and respect from the vast majority of my friends and family on Facebook.  It cut down on the number of times I had to repeat the "Diagnosis" story as over 100 people were informed of my situation in one fell swoop.

Most of all for me personally, being very open about my status afforded me the luxury of not being chained to my illness or the stigma that can follow it.  I also like to believe I may have impacted someone elses life positively, so-to-speak!

Individually there are many factors one must think of when deciding how "open" to be with their HIV status.  Take the time to think it through before jumping out of the closet.

I am glad that calling your boss from the very clinic room where you learned your diagnosis worked well for you.  However, I can only guess you are in a rather rare professional situation, where this was wise and appropriate. 

Secondly, I am also glad that your Facebook disclosure worked for you.  However, this:

Most important though is my hope that each and everyone of you will read this and think about what you are doing and who you are trusting before you make a mistake that cannot be corrected. I have nothing to hide and hope my diagnosis and disclosure will help at least one person to change their behavior before its too late. That will make this post worth putting my business out there.

There is something in the jist of your comment that doesn't ring true to me.  I'm SURE it's true and meaningful for you.  First it is rather doom-y.  "a mistake that cannot be corrected" and "change before it is too late...."  (abandon hope all ye who enter here?).

And second - whenever I chose to disclose to friends, passing on a safe sex message was usually a secondary issue. After all, all my friends know about safer sex and the trust game already.  Yes you are correct at least that its a gripping reminder when a friend gets HIV by making mistakes.

(Usually its just to tell another layer of me, or when I was first diagnosed, to explain my health challenges at that time, or to tell people about how it is to live with HIV.)

Just wanted to express that alternative take.

« Last Edit: September 11, 2012, 09:25:29 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Pricho01

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Re: How out about HIV to be?
« Reply #37 on: September 11, 2012, 08:37:55 AM »
I told my boss and it was the worst mistake of my professional career! Harassed, discriminated against - but carefully - nothing too overt.... bastards! **SIGH** Be careful....
Dear Optimist, Pessimist, and Realist, While you guys were busy arguing about the glass of water, I drank it! Sincerely, The Opportunist

Offline harleymc

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Re: How out about HIV to be?
« Reply #38 on: September 13, 2012, 01:41:06 AM »
It's always a tough call deciding who to tell.

I had great support from my late mother and one of my two sisters. With my other sister, there's never been any rejection but with her HIV has become the 'elephant in the room' and she never asks how my health is. You just never know before hand.

As for work... Some work places have been really great and supportive, but I do pick and choose who to tell. As Pricho mentioned, it can cut the other way, so if you're in a vulnerable situation keeping quiet can have it's benefits.
At my last workplace my coworkers all knew but my sociopath line-manager was kept in the dark by the whole team.

The other plus to telling people is that trust levels can go through the roof, you may find out a lot about folks that you had no idea about.

Offline deibster

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Re: How out about HIV to be?
« Reply #39 on: September 13, 2012, 11:32:08 PM »
It has to be a personal decision, but the fear of disclosure is almost always worse than the actual disclosure. My ex told my mom that I was dating a Poz guy, so it wasn't a shock when I became poz.

I didn't tell my sons, because my dad was very ill when I was in HS & I rebelled when I went to college & got horrible grades for a year. This prevented me from getting into professional school. I told my sons when they were 30 & 27, and I knew they were done with college & military pilot training, etc. Their only problem with it was that I waited so long to tell them. I explained to them why I had waited & that helped. I also told them in person, because they live across the country & I didn't want to be explaining to them on the phone that I had hiv & was in the hospital.

I've been to the hospital 4 times for complications, bleeding & bruising problems, not opportunistic infections. I even got pneumonia from bleeding into my lungs & can no longer take aspirin or Ibuprofen.
Hugs from Provincetown, Deiby  :)
« Last Edit: September 13, 2012, 11:34:23 PM by deibster »
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Welbutrin, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasacort, Centrum, Flax Oil, Fish Oil

Offline elf

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Re: How out about HIV to be?
« Reply #40 on: September 15, 2012, 01:15:04 PM »
If you live in a relatively (mentally) stable society, you can be open about your status. If you live in a country where people just look for another reason to discriminate against you, it would be better for you to keep the secret to yourself (Dana Scully's ''Trust no one'' should be your motto). I told my best friend (at that time), and she spread the news all over the country, and I even received anonymous threats via Facebook (from ''I know you have HIV, I'm gonna tell everyone'' to ''You stupid cunt infected me'').

One thing is certain: You can never know how people are going to react!

Paradoxically, the most HIV prejudice can be found in gay world and in the area of medicine...I was in medical school (5th year) when I got infected, and now I'm a resident of neurology and psychiatry.

I know I would be rejected if I told everyone about my status.
For the time being, I feel like a Jewish person in Nazi Germany who does not want to reveal they're Jewish because of the fear of prosecution.

And all those ''you must disclose''-laws are not dissimilar to Nazi laws of yesteryear.
They want to segregate us as if the HIV infection were a quarantine disease (which is not).
« Last Edit: September 15, 2012, 01:40:06 PM by elf »
Let's have a Kiki!

Offline TnMan62

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Re: How out about HIV to be?
« Reply #41 on: September 23, 2012, 10:02:40 PM »


         10      24      91
GROWING UP ON A FARM IN RURAL JACKSON COUNTY TENNESSEE, I NEVER THOUGHT I WOULD BECOME AN EDUCATOR, AND STAND BEFORE HUNDREDS,  AND EVENTUALLY THOUSANDS TO OPEN UP ABOUT MY LIFE IN THE WAY THAT I HAVE.
THAT CRISP FALL DAY IN OCTOBER BEGAN LIKE MOST OTHERS , IN THAT IT WAS OFF TO WORK AS AN ASSEMBLER IN THE LOCAL FACTORY IN GAINESBORO. LIFE FOR ME WAS GOOD, I HAD A JOB, AND I WAS IN THE MIDST OF A BUDDING RELATIONSHIP, AND IT ALL SEEMED TO BE FALLING INTO PLACE,  EVEN THOUGH THE SUMMER THAT HAD JUST PASSED WAS ONE THAT HAD ME CONCERNED AND TRYING TO FIGURE OUT WHAT WAS CAUSING THE STRANGE SPOTS TO APPEAR ON MY ARMS, AND THEN MY LEGS. I FELT GOOD, HAD LOTS OF ENERGY, WAS ABOUT TO ENTER MY 30TH YEAR OF LIFE. I WAS HAPPY..LIFE WAS GOOD. BUT THAT WAS ALL ABOUT TO CHANGE.
THIS WAS IN THE EARLY DAYS OF THE INTERNET, AND I DID NOT HAVE ACCESS TO A COMPUTER, BUT I DID HAVE ACCESS TO A MEDICAL BOOK. I BEGAN SEARCHING TO SEE WHAT I MIGHT LEARN ABOUT MY "STRANGE SPOTS", THAT APPEARED TO ME LIKE TINY SPOTS OF BLOOD THAT ROSE TO THE SURFACE OF MY SKIN AS TINY BLOOD BLISTERS, FOR A LACK OF A BETTER DESCRIPTION. I FOUND IN THE MEDICAL BOOK, AN ARTICAL ABOUT SOMETHING CALLED ITP, OR, IDIOPATHIC THROMBOCYCTOPENIA PURPURPA, A CONDITION WHERE BLOOD PLATELETS ARE ABNORMALLY LOW, CAUSING TINY BRUISES TO APPEAR. ITS CAUSE SOMEWHAT UNCERTAIN, BUT COULD BE AN INDICATION OF LEUKEMIA, LUPUS, EVANS SYNDROME, OR HIV.  MY MIND RACED BACK TO HALLOWEEN, 1989, AND THE PERSON I WAS SEEING AT THAT TIME, AND THE DISCUSSION WE'D HAD PRIOR TO ENGAGING IN UNPROTECTED SEX, AND BEING SOMEONE OLDER THAN MYSELF, WHO WAS VERY CHARMING, AND MADE ME FEEL SPECIAL. AGAINST MY BETTER JUDGEMENT, I ALLOWED MYSELF TO BECOME INVOLVED AND TRUSTING WHAT WAS TOLD ME  TO BE TRUE. IT LASTED FOR ABOUT 3 MONTHS,AND THE ROMANCE ENDED. SOMETHING ABOUT IT JUST DIDN'T FEEL RIGHT, BUT, GROWING UP IN A TIME AND PLACE, WHERE TRUST WAS A GIVEN, I MOVED ON, AND MARKED IT OFF AS A LEARNING EXPERIENCE, AND A TEST OF TRUST. THAT TRUST AND BEING A NAIVE COUNTRY BOY, WOULD COME BACK TO "BITE" ME IN A WAY THAT WOULD FOREVER CHANGE MY LIFE SOME TWO YEARS LATER, AND, I TRIED TO PUT OUT OF MY MIND WHAT I SUSPECTED WAS THE REAL CAUSE OF MY NEW, STRANGE, BRUISES.
AS NOTED EARLIER, LIFE FOR ME IN THE SUMMER OF  "91", WAS GOING GOOD. THERE WAS SOMEONE NEW IN MY LIFE, WORK WAS GOOD, PLUS, IT WAS ALMOST HALLOWEEN, AND THE GROUP I WORKED WITH DECIDED WE WOULD DRESS AS THE FLINTSTONES FOR OUR WORKPLACE HALLOWEEN COSTUME CONTEST. I WOULD BE DINO. WE HAD OUR COSTUMES MADE, AND IT WAS GONNA BE FUN. LITTLE DID I KNOW, I'D BE FORCING MYSELF TO EVEN PARTICIPATE DRESSED AS A CARTOON CHARACTER A WEEK AFTER I GOT THE PHONE CALL AT WORK.
LEADING UP TO OCTOBER, AND HALLOWEEN, AND STILL HAVING THE ISSUE OF BRUISES APPEARING AT VARIOUS INTERVALS THROUGHOUT THAT SUMMER, I FINALLY DECIDED TO GO SEE A DOCTOR ABOUT WHAT WAS GOING ON, BECAUSE IT WAS NOT GETTING BETTER ON ITS OWN. ON OCTOBER 16, 1991, AFTER LEAVING WORK, I DROVE INTO COOKEVILLE TO  A WALK IN CLINIC, AND, AS SOON AS I WALKED INTO THE ROOM WHERE THE DOCTOR WAS, HIS IMMEDIATE RESPONSE AFTER SEEING MY "SPOTS", WAS THAT HE THOUGHT MOST LIKELY IT WAS LEUKEMIA, AND THAT I NEEDED TO BE SEEN BY AN ONCOLOGIST, OR BETTER KNOWN AS A CANCER SPECIALIST. I WAS THINKING AT THIS POINT, "OKAY, LEUKEMIA, IT CAN'T BE TOO BAD, BUT, STILL I COULD FEEL THE FEAR STIRRING AS I OVERHEARD THE DOCTOR ON THE PHONE WITH A CANCER SPECIALIST IN NASHVILLE, MAKING ME AN APPOINTMENT FOR THE VERY NEXT DAY. IT SOUNDED URGENT, BUT I TRIED TO STAY CALM. AFTER ALL, I WAS YOUNG, I WAS ALMOST 30, BUT, HEALTHY AND LIFE WAS GOOD.  SO, THE NEXT DAY, OFF TO NASHVILLE I GO, TO THE CANCER CLINIC, THAT SEEMED SO BUSY, WITH PEOPLE SITTING AROUND HAVING BLOOD DRAWN, SOME LOOKING FRAIL, AND, ME, BY MYSELF...SCARED! AFTER MEETING THE DOCTOR THERE, GETTING MY OWN BLOOD DRAWN, AND GIVING MY MEDICAL HISTORY, WHICH UP TO THAT POINT HAD BEEN QUITE BORING, I WAS FEELING MORE AT EASE. I CONVERSED WITH THE DOCTOR AS I AWAITED MY BLOODWORK RESULTS. IT WAS DURING THIS CONVERSATION WITH THE DOCTOR THAT THE SUBJECT OF MY SEXUAL HISTORY WAS BROUGHT UP, AND IF I HAD EVER PUT MYSELF AT RISK FOR HIV INFECTION. I RESPONDED WITH THE ANSWER THAT I HAD SOME 2 YEARS PRIOR, PARTICIPATED IN RISKY BEHAVIOR, BUT, THAT I'D BEEN TOLD BY THE PERSON I WAS WITH, THAT EVERYTHING WAS FINE, AND THAT IT WAS ALL OKAY. AND, THAT I'D HAD A HIV TEST IN  1988 THAT CAME BACK NEGATIVE FOR AN INSURANCE POLICY I HAD APPLIED FOR AT THE TIME, AND THAT I HAD NOT PARTICIPATED IN ANYTHING RISKY UNTIL HALLOWEEN 1989. STILL, THE DOCTOR ASKED IF I WOULD BE WILLING TO TAKE AN HIV TEST, JUST TO RULE IT OUT. I AGREED, BUT IT WOULD BE A FEW DAYS TO GET THE RESULTS BACK. MEANWHILE, THE RESULTS OF MY OTHER BLOODWORK INDICATED AN EXTREMLY LOW BLOOD PLATELET COUNT, AND A DIANOSIS OF ITP WAS GIVEN. AT LEAST IT WAS NOT LEUKEMIA, BUT, ITP WAS PRETTY SERIOUS, AND IT WAS DECIDED A ROUND OF STEROIDS MIGHT GET THINGS BACK ON TRACK. IF ONLY IT COULD BE THAT SIMPLE. I LEFT THE CANCER CLINIC, WITH A PRESCRIPTION FOR STEROIDS, AND WHAT WOULD BECOME AN ALMOST WEEKLY FOLLOW UP VISIT TO SEE HOW, OR IF THE MEDICINE WAS GOING TO WORK. I DROVE BACK HOME UP INTERSTATE 40, WITH THE NAGGING FEELING OF THE HIV TEST I'D JUST HAD, BUT, STILL THINKING THE OUTCOME WOULD BE A NEGATIVE RESULT.
THURSDAY, OCTOBER 24, 1991, OR, 10 24 91, AS I HAVE COME TO CALL IT ROLLED AROUND. I WENT TO WORK, CLOCKED IN, AND WENT ABOUT THE USUAL ROUTINE OF KEEPING THE "GIRLS" SUPPLIED WITH PARTS TO ASSEMBLE THE PICTURE FRAMES. I HAD GIVEN THE PEOPLE I WORKED WITH A QUICK UPDATE AS TO WHAT I HAD LEARNED AT MY DOCTORS VISIT A WEEK PRIOR, AND, THAT THERE WOULD HAVE TO BE FOLLOW UP VISITS, AND THAT THE ITP WAS QUITE SERIOUS, AND COULD EVENTUALLY LEAD TO ME HAVING TO HAVE MY SPLEEN REMOVED IF THE MEDICATION DID NOT WORK. THERE WAS CONCERN, BUT EVERYONE WAS UPDATED, AND THE DAY WENT ON AS FACTORY LIFE DOES.  IT WAS ABOUT 11:05 A.M. THAT  I SAW MY SUPERVISOR COMING TOWARD ME AS I WENT ABOUT MY JOB. HE WAS ON THE FLOOR TO INFORM ME THAT I HAD A PHONE CALL, THAT I COULD TAKE IN THE OFFICE, AND IT WAS MY NASHVILLE DOCTOR NEEDING TO SPEAK TO ME ABOUT MY VISIT A WEEK EARLIER. I MADE MY WAY TO THE OFFICE, WHERE I WAS GIVEN PRIVACY. I ANSWERED THE PHONE. THE DOCTOR, WHO WAS TREATING ME FOR THE ITP, SAID WITHOUT HESITATION.."YOUR HIV TEST IS POSITIVE, YOU HAVE PROBABLY 5, MAYBE 7 YEARS TO LIVE, I SUGGEST YOU FIND A DOCTOR WHO WILL TREAT YOU".  THE ROOM APPEARED TO SPIN, BUT, IN SLOW MOTION. I COULD NOT BELIEVE WHAT I HAD JUST BEEN TOLD. I BEGAN TO CRY, AND AT THAT POINT, MY LIFE BEGAN TO SPIRAL INTO PURE SADNESS, AND, A FEELING OF WHERE DO I GO FROM HERE?
SOMEHOW, I MADE MY WAY OUT OF THE SUPERVISORS OFFICE, AND BACK ONTO THE WORKFLOOR TO TRY AND FINISH OUT THE DAY. MY CO WORKERS COULD TELL I HAD BEEN CRYING, AND THAT I WAS TERRIBLY UPSET. IT WAS AT THAT POINT I BEGAN TO BE MAKE PEOPLE BELIEVE THAT THE PHONE CALL WAS ABOUT THE ITP, AND THAT IT WAS SO MUCH MORE SERIOUS THAN THE DOCTOR HAD ORIGINALLY THOUGHT, AND THAT IT WOULD TAKE SOME AGGRESSIVE TREATMENT TO GET THINGS UNDER CONTROL. I SPENT THE BIGGEST PART OF THAT DAY, IN THE BATHROOM CRYING, TRYING TO PROCESS WHAT I HAD JUST LEARNED, WONDERING HOW I WOULD EVER BE ABLE TO HAVE A LIFE AGAIN, OR, IF I EVEN WANTED A LIFE. ALL I COULD  FEEL WAS DESPAIR, AND COMPLETE LONLINESS, NEEDING TO RELEASE MY FEAR, AND THE SHAME WAS ALMOST UNBEARABLE. I, HAD NOT ONLY FAILED MYSELF, I HAD FAILED EVERYONE. I HAD ALWAYS BEEN A PEOPLE PLEASER, AND NOW, I WAS SOMEONE, WHO, HAD ALLOWED MYSELF TO BECOME INFECTED WITH A DISEASE THAT I HAD FELT  ONLY HAPPENED TO SOMEONE ELSE, IN SOME OTHER PLACE, AND WOULD NEVER BE SOMETHING I WOULD HAVE TO EVER DEAL WITH PERSONALLY. MY ONLY THOUGHTS WERE TO SOMEHOW DISAPPEAR WITHOUT THE TRUTH EVER COMING OUT. I HAD NOT REALLY ACCEPTED MYSELF FOR WHO I WAS, AND NOW THERE WAS AIDS ON TOP OF IT ALL. HOW, OR COULD I EVER FIND THE STRENGTH TO GO FROM THIS DAY.
I SURVIVED  THE DAY, MADE THE DECISION TO GO TELL MY PARENTS THAT I WAS INFECTED WITH HIV, BUT, WHEN I GOT TO THEM, I COULD NOT BRING MYSELF TO TELL THEM, RATHER, I DECIDED TO LET THE DISEASE TAKE ITS COURSE, AND MY LIFE, AND TAKE IT AS SOON AS POSSIBLE, WITHOUT ANYONE EVER KNOWING THE REAL TRUTH ABOUT ME.  I DID, HOWEVER, TELL THE PERSON I WAS SEEING AT THE TIME, AND JUST A FEW, CLOSE PEOPLE I CONSIDERED MY FRIENDS. THE NEXT SEVERAL DAYS WERE LONG, THE NIGHTS WERE SLEEPLESS, THE TEARS MANY, AND THE OVERWHELMING FEELING OF SADNESS, BROUGHT ME TO WHAT I THOUGHT WOULD BE THE BREAKING POINT. BUT INSTEAD, IT WOULD BECOME THE FIRST STEPS OF THIS 20 YEAR JOURNEY I HAVE BEEN ON. SOMEHOW, I WOULD FIND THE COURAGE AND STRENGTH TO TURN IT ALL AROUND AND LOVE MYSELF AGAIN, AND ACCEPT MYSELF FOR WHO I AM, ALONG WITH THE RESPONSIBILITY OF ALLOWING MYSELF TO BECOME INFECTED WITH HIV.
THE DAY OF HALLOWEEN ROLLED AROUND AT WORK. I PUT MY DINO COSTUME ON, MY BRAVE FACE ON, AND PRETENDED TO ENJOY THE DAY. DINO NEVER LOOKED THIS SAD ON TV, BUT, I TRIED TO MAKE IT LOOK LIKE I WAS ENJOYING MYSELF, WHILE THE WHOLE TIME, I WAS TRYING TO HOLD MYSELF TOGETHER TO GET THROUGH 1 MORE DAY.  THIS WOULD BECOME MY MODE OF SURVIVAL FOR THE NEXT ALMOST 2 YEARS. PRETENDING IT WAS ALL ALRIGHT, PUTTING ON A BRAVE FRONT, NEVER LETTING MY GUARD DOWN SO THAT ANYONE MIGHT SUSPECT OR FIND OUT ABOUT THE "SECRET" I WAS CARRYING AROUND.I DESCRIBED IT AT THE TIME LIKE A DUCK YOU MIGHT SEE SWIMMING IN THE WATER, ON THE SURFACE, EVERYTHING APPEARS TO BE GOING SO SMOOTHLY, BUT JUST BENEATH THE SURFACE, ITS LITTLE LEGS AND FEET ARE PADDLING LIKE CRAZY, JUST TO KEEP MOVING. THATS HOW I FELT, CALM ON THE SURFACE, BUT PADDLING LIKE CRAZY, JUST TO STAY ON COURSE.  THE ISSUE WITH MY ITP WAS AN OFF AND ON SITUATION OF ROUNDS OF STEROIDS FOR AWHILE, THEN OFF THEM, ONLY TO BE BACK TAKING THEM AGAIN ONCE MY PLATELET COUNT FELL TO DANGEROUSLY LOW LEVELS. EVENTUALLY, ON DECEMBER 21, 1993, I WENT IN THE HOSPITAL TO HAVE MY SPLEEN REMOVED, AS A LAST DITCH EFFORT TO RESOLVE THE ITP. IT HAS APPEARED TO HAVE WORKED, AS THERE HAVE BEEN NO PROBLEMS AS OF YET NOW, SOME ALMOST 18 YEARS LATER. THE HIV/AIDS ISSUE WAS EVER CONSTANT HOWEVER. BUT, I DID FIND THE COURAGE TO REVEAL TO MY IMMEDIATE FAMILY OF WHAT WAS GOING ON, AND THE SITUATION WITH HIV, BUT IT WOULD BE SOME TIME BEFORE I WOULD GATHER THE COURAGE TO "COME OUT" TO THE WORLD.
ON THE DAY I GOT THE CALL ABOUT MY POSITIVE HIV TEST, I DID HAVE ENOUGH WITS ABOUT MYSELF TO REMEMBER A LADY I HAD HEARD OF THAT WORKED WITH HIV AND PEOPLE WHO WERE LIVING WITH IT. AFTER DAYS OF FEELING SORRY FOR MYSELF AND OF RUNNING OUT OF TEARS, I GOT IN TOUCH WITH BARBARA, THE ONE, IN COOKEVILLE, WHO WOULD HELP ME TO LEARN TO LIVE AGAIN, BY GETTING ME INVOLVED IN A SUPPORT GROUP FOR PERSONS LIVING WITH HIV/AIDS, AND BY HELPING GET ME SET UP WITH AN INFECTIOUS DISEASE DOCTOR WITH VANDERBILT HOSPITAL, WHO , WOULD TREAT MY ILLNESS WITH MEDICATION AND GREAT COMPASSION. I WAS GOING THROUGH THE GRIEVING PROCESS FOR MYSELF. THE FEELINGS OF SADNESS, ANGER, DEALS WITH GOD, AND ONTO ACCEPTANCE OF MY DISEASE. IT WAS THROUGH THESE PEOPLE AND MY OWN PROCESS, THAT I BEGAN TO FORGIVE, NOT ONLY MYSELF, BUT TO FORGIVE THE PERSON WHO HAD INFECTED ME, AND REALIZING I HAD TO ACCEPT THE RESPONSIBILITY FOR MY OWN ACTIONS IN ALL THIS.
AFTER HAVING MY SPLEEN REMOVED, AND GETTING BACK TO WORK, I WAS STILL PROCESSING AND GRADUALLY ACCEPTING THE DISEASE I HAD, BUT, NOT BEFORE DECIDING TO LEAVE THE JOB I HAD, DUE IN PART TO THE GREAT AMOUNT OF STRESS I WAS UNDER TRYING TO WORK, AND TRYING TO KEEP MY SECRET FROM ALL MY CO WORKERS. I HAD LEARNED THAT STRESS WAS A THING I NEEDED VERY LITTLE OF IN ORDER TO TRY AND FIGHT HIV, SO, I MADE THE HARD DECISION TO LEAVE MY JOB. I LEFT MY FRIENDS AND MY JOB ON JULY 29, 1993. THIS BEGAN A NEW CHAPTER. ONE THAT WOULD BRING ME INTO THE FRONTLINE OF HIV/AIDS AWARENESS AND EDUCATION. I WOULD BECOME THE FACE OF AIDS.
AFTER LEAVING THE JOB I'D BEEN AT FOR SEVERAL YEARS, I THREW MYSELF INTO MY OWN RECOVERY, FOR LACK OF A BETTER DESCRIPTION. IT BECAME IMPORTANT FOR ME TO TAKE CARE OF MYSELF, NOT ONLY MY PHYSICAL HEALTH, BUT, MY MENTAL AND SPIRITUAL HEALTH AS WELL. I TOOK THE MEDICINES PRESCRIBED FOR HIV TREATMENT, STARTING THOSE ON CHRISTMAS EVE, 1991, AND, HAVING KEPT THAT GOING TO DATE. I STAYED INVOLVED IN THE SUPPORT GROUP , "CIRCLE OF FRIENDS', I EVEN VOLUNTEERED FOR COMMITTEES THAT HELPED TO BRING ABOUT EDUCATION AND AWARENESS, ALONG WITH FEDERAL MONEY INTO MY COMMUNITY. MAYBE, I WAS FINDING MY WAY OUT OF THE DARKNESS OF THIS TERRIBLE DISEASE, OR MAYBE IT WAS JUST A GOOD COPING MECHANISM. IT WAS WITHIN THIS  TIME OF MOVING FORWARD, I MET OTHERS WHO, WERE IN THE SAME BOAT AS MYSELF, IN THAT WE WERE IN THE SAME FIGHT FOR OUR LIVES, WITH HOPE OF SOMEHOW BEATING THE ODDS OF A DISEASE THAT HAD NO CURE. IT WAS HERE THAT I FORMED FRIENDSHIPS, AND SADLY LOST MANY AS WELL. SOMETIMES, THE OLD FEELINGS OF THE EARLY DAYS OF MY DIAGNOSIS FOUND THEIR WAY BACK INTO MY LIFE. MOSTLY WHEN WORD WOULD COME THAT SO AND SO HAD DIED. IT MADE THE REALITY OF AIDS VERY CLEAR. THE "HOT" NEWS TOPIC HAD COME HOME TO THE SMALL TOWNS AND COMMUNITIES, YET, IT WAS NOT PERCIEVED AS SUCH IT SEEMED, BECAUSE IT SEEMED NO ONE HAD REALLY KNOWN ANYONE WITH AIDS.  THIS WOULD SOON CHANGE. THE DECISION WOULD BE MINE TO MAKE IT A POINT TO SHOW OTHERS THAT THE DISEASE WAS REAL, AND THAT IT WAS TAKING MANY LIVES. MANY LIVES LIVED AND LOST, UNDER THE DISGUISE OF CANCER, AND OTHER ILLNESSES, THAT WERE OKAY TO TALK ABOUT IN PUBLIC.
IT WAS THROUGH MY COMMITTEE VOLUNTEERING AND THE SUPPORT GROUP THAT I MET PEOPLE WHO INSPIRED ME, AND OFFERED ME HOPE. IT WAS THESE PEOPLE AT DIFFERENT POINTS IN MY LIFE THAT GAVE ME COURAGE TO BE ME, AND TO MAKE THE DECISION TO STEP FORWARD AND BECOME ONE OF THE LEADERS FOR THOSE WHO WERE AFRAID TO COME FORWARD WITH THEIR HIV/AIDS STATUS FOR WHATEVER REASON. THE TIME HAD COME. THERE WERE 2 PEOPLE IN PARTICULAR WHO MADE A GREAT IMPACT ON ME, OTHER THAN BARBARA AND MY HIV DOCTOR. THESE 2 PEOPLE  WERE THE MAIN REASONS I DECIDED TO BE THE "SPOKESPERSON" FOR HIV/AIDS AWARENESS AND EDUCATION. DEBBIE AND STEVE, BOTH OF WHOM HAVE NOW PASSED FROM THIS LIFE, AND WALKED THE PATH I NOW WALK, SHOWED GREAT COURAGE IN THE FACE OF THIS DISEASE. I HELD STEVE'S HAND AS HE WAS DYING, AND IT WAS DURING THIS TIME THAT HE AND I DISCUSSED THE NEED FOR SOMEONE LOCALLY TO NOT BE AFRAID TO COME FORWARD WITH THEIR HIV STATUS, AND TO SPEAK FOR THOSE WHO COULD NOT OR WOULD NOT, FOR WHATEVER REASON. IT WAS DEBBIE, WHO, LIKE ME HAD DEALT WITH ITP, AND HIV, WHO, WAS THE  ONE IN THE NASHVILLE AREA, WHO WENT "PUBLIC" WITH HER STATUS. IT WAS SHE, WHO STOOD WITH ME IN COOKEVILLE ON MORE THAN ONE OCCASION AS WE TOLD OUR STORIES OF LIVING WITH HIV AND AIDS.  ON WORLD AIDS DAY, DECEMBER 1, 1994, I WAS THE FEATURED SPEAKER AT COOKEVILLE REGIONAL MEDICAL CENTER, FOR THE COMMUNITY WIDE WORLD AIDS DAY. THE LITTLE SHY FARMBOY I HAD BEEN, STEPPED INTO THE SPOTLIGHT THAT DAY TO SAY I HAVE HIV DISEASE. MY STORY, ALONG WITH MY PICTURE WAS FEATURED IN THE LOCAL HERALD - CITIZEN NEWSPAPER THAT DAY, I DID RADIO SHOWS, AND WAS ON THE LOCAL TV STATION DISCUSSING   WHAT LIFE WAS LIKE LIVING WITH HIV. NO ONE ELSE HAD DONE IT BEFORE ME. I DID NOT KNOW WHAT TO EXPECT AFTER EVERYTHING WAS PUT OUT THERE IN SUCH A PUBLIC WAY, BUT I KNEW THERE WAS NO TURNING BACK AFTER THAT.
IN THE DAYS THAT FOLLOWED MY "ANNOUNCEMENT", I BEGAN TO HEAR FROM PEOPLE WHO I HAD WORKED WITH, SOME SENT CARDS AND LETTERS, SOME I RAN INTO AT VARIOUS PLACES GAVE ME HUGS.  BUT ALL, WAS NOT WHAT I GUESS I HAD HOPED FOR, NOT REALLY EVEN SURE WHAT I'D HOPED FOR, BUT THERE WERE THOSE WHO CALLED ME "CRAZY", SOME, WHO NO LONGER WANTED TO BE AROUND ME, SOME, WHO SAID I DESERVED DEATH AND  THAT HELL WAS THE PLACE FOR ME AND PEOPLE LIKE ME. IT WAS A TIME  WHEN SOME PEOPLE DID NOT KNOW WHAT TO SAY, OR HOW TO REACT TOWARD ME. IT WAS  A TIME WHEN I WENT FULL FORCE INTO SPEAKING OUT AND DOING WHATEVER I COULD TO SHOW PEOPLE THAT HIV AND AIDS WAS ALL ABOUT, AND THAT IT WAS TIME TO SHOW COMPASSION, AND TO EDUCATE THEMSELVES. IT WAS ALSO A TIME FOR ME TO SEE JUST HOW FAR I HAD COME IN MY JOURNEY, AND TO REALIZE THAT I WAS WORTHY AS A HUMAN BEING, AND TO FINALLY BE OPEN ABOUT WHO I WAS AND THAT IT WAS OKAY TO BE ME. I WON'T SAY IT WAS ALL EASY, NOR WILL I SAY I MIGHT HAVE DONE SOME THINGS DIFFERENTLY. BUT, I WILL SAY, IT ALL  HAS MADE ME WHO I AM TODAY.
THIS OCTOBER 24, 2011, MARKS THE 20TH YEAR ANNIVERSARY OF MY HIV POSITIVE DIAGNOSIS. 10 24 91,  AS IT HAS COME TO BE KNOWN IS A DATE THAT STICKS IN MY MEMORY AS A DATE OF MUCH PAIN , SADNESS, AND UNCERTAINTY FOR ME. IT ALSO HAS BECOME A STARTING POINT ON MY JOURNEY OF SELF ACCEPTANCE,FORGIVENESS (FOR MYSELF AND OTHERS) AND A BETTER UNDERSTANDING OF THOSE AROUND ME THAT HAVE EITHER EMBRACED ME, OR , THOSE WHO, HAVE DUE IN PART TO THEIR OWN IGNORANCE OR LACK OF UNDERSTANDING CHOSE TO TURN AWAY FROM ME. LIVING WITH HIV, AND NOW AIDS FOR ABOUT 22 YEARS NOW, IN MANY WAYS HAS BEEN A BLESSING, IN THAT IT HAS ALLOWED ME TO SEE LIFE IN A WHOLE OTHER LIGHT, SOMETHING THAT MANY STILL DON'T GET, OR, NEVER WILL. I STILL SEE THE SAME DOCTOR I FIRST SAW FROM VANDERBILT BACK IN "91". HE IS A GREAT MAN, AND I'VE HAD A GREAT TEAM OF CAREGIVERS ALL THESE YEARS. I, FOR THE MOST PART, CONTINUE TO DO WELL, ALTHOUGH, I CAN SEE THE AFFECT THE DISEASE, AND IN SOME CASES THE MEDICINE I TAKE TO HELP CONTROL IT, HAVE HAD ON MY BODY.  I NEVER THOUGHT 20 YEARS AGO, AT ALMOST 30 YEARS OF AGE, I WOULD LIVE TO SEE 50, BUT, ITS IN SIGHT. I HAVE SCRAPBOOKED MY JOURNEY OF 20 YEARS, ALONG WITH JOURNAL ENTRIES ABOUT EVENTS OF WHAT ITS LIKE TO LIVE WITH A DISEASE WITH NO KNOWN CURE, AND SADLY, STILL WITH A CERTAIN AMOUNT OF STIGMA. SOMEONE ONCE TOLD ME.."THERE HAVE ALWAYS BEEN SURVIVORS OF EVERY DISEASE AND EPIDEMIC".... I SUPPOSE THAT MIGHT BE TRUE. I CAN SAY, I'VE BEEN A 20 PLUS YEAR SURVIVOR OF THIS DISEASE THAT CONTINUES TO IMPACT OUR WORLD. WHAT A JOURNEY IT HAS BEEN.
scottfree1@hotmail.com

Offline DiabloII

  • Member
  • Posts: 13
  • Life is a Battle Field
Re: How out about HIV to be?
« Reply #42 on: September 30, 2012, 09:34:52 PM »
Hi all! 

New here.  Tested poz June 06, 2012.  Been a long rough road so far.  I have told only 4 people.  None of them were family!  I am afraid to tell my family for fear of hearing that it is God's curse or something!  They are religious fanatics!  But I love them!  The first person I told was a friend that was poz.  He gave me the best advice and told me not to tell anyone until the shock wears off, then only tell who I have to.  Right now, I think that is the best!  The way some of my gay friends act, they would start talking and everyone would know.  What I am most afraid of is...., then they would treat me differently!  I know how they talked about others as if they were evil or someone to be shunned!

However, in the end I believe it is a personal choice that only you can make!  Good or bad!

Life is a battlefiled and we have to fight for ourselves!

Offline mecch

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  • Posts: 10,702
  • red pill? or blue pill?
Re: How out about HIV to be?
« Reply #43 on: October 02, 2012, 01:13:04 PM »
Thanks for sharing your incredible journey! (It was only possible for me to read it this way:) 


Growing up on a farm in rural Jackson county Tennessee, I never thought I would become an educator, and stand before hundreds, and eventually thousands to open up about my life in the way that I have.

That crisp fall day in October began like most others, in that it was off to work as an assembler in the local factory in Gainesboro. Life for me was good, I had a job, and I was in the midst of a budding relationship, and it all seemed to be falling into place, even though the summer that had just passed was one that had me concerned and trying to figure out what was causing the strange spots to appear on my arms, and then my legs. I felt good, had lots of energy, was about to enter my 30th year of life. I was happy. Life was good. But that was all about to change.

This was in the early days of the Internet, and I did not have access to a computer, but I did have access to a medical book. I began searching to see what I might learn about my "strange spots", that appeared to me like tiny spots of blood that rose to the surface of my skin as tiny blood blisters, for a lack of a better description. I found in the medical book, an article about something called itp, or, idiopathic thrombocyctopenia purpurpa, a condition where blood platelets are abnormally low, causing tiny bruises to appear. Its cause somewhat uncertain, but could be an indication of leukemia, lupus, evans syndrome, or hiv.  My mind raced back to Halloween, 1989, and the person I was seeing at that time, and the discussion we'd had prior to engaging in unprotected sex, and being someone older than myself, who was very charming, and made me feel special. Against my better judgment, I allowed myself to become involved and trusting what was told me to be true. It lasted for about 3 months, and the romance ended. Something about it just didn't feel right, but, growing up in a time and place, where trust was a given, I moved on, and marked it off as a learning experience, and a test of trust. That trust and being a naive country boy, would come back to "bite" me in a way that would forever change my life some two years later, and, I tried to put out of my mind what I suspected was the real cause of my new, strange, bruises.

As noted earlier, life for me in the summer of  "91", was going good. There was someone new in my life, work was good, plus, it was almost Halloween, and the group I worked with decided we would dress as the Flintstones for our workplace Halloween costume contest. I would be Dino. We had our costumes made, and it was gonna be fun. Little did I know, I’d be forcing myself to even participate dressed as a cartoon character a week after I got the phone call at work.

Leading up to October, and Halloween, and still having the issue of bruises appearing at various intervals throughout that summer, I finally decided to go see a doctor about what was going on, because it was not getting better on its own. On October 16, 1991, after leaving work, I drove into Cookeville to a walk in clinic, and, as soon as I walked into the room where the doctor was, his immediate response after seeing my "spots", was that he thought most likely it was leukemia, and that I needed to be seen by an oncologist, or better known as a cancer specialist. I was thinking at this point, "okay, leukemia, it can't be too bad, but, still I could feel the fear stirring as I overheard the doctor on the phone with a cancer specialist in Nashville, making me an appointment for the very next day. It sounded urgent, but I tried to stay calm. After all, I was young, I was almost 30, but, healthy and life was good.  So, the next day, off to Nashville I go, to the cancer clinic, that seemed so busy, with people sitting around having blood drawn, some looking frail, and, me, by myself...scared! After meeting the doctor there, getting my own blood drawn, and giving my medical history, which up to that point had been quite boring, I was feeling more at ease. I conversed with the doctor as I awaited my bloodwork results. It was during this conversation with the doctor that the subject of my sexual history was brought up, and if I had ever put myself at risk for hiv infection. I responded with the answer that I had some 2 years prior, participated in risky behavior, but, that I’d been told by the person I was with, that everything was fine, and that it was all okay. And, that I’d had a hiv test in 1988 that came back negative for an insurance policy I had applied for at the time, and that I had not participated in anything risky until Halloween 1989. Still, the doctor asked if I would be willing to take an hiv test, just to rule it out. I agreed, but it would be a few days to get the results back. Meanwhile, the results of my other bloodwork indicated an extremely low blood platelet count, and a diagnosis of itp was given. At least it was not leukemia, but, itp was pretty serious, and it was decided a round of steroids might get things back on track. If only it could be that simple. I left the cancer clinic, with a prescription for steroids, and what would become an almost weekly follow up visit to see how, or if the medicine was going to work. I drove back home up interstate 40, with the nagging feeling of the hiv test I’d just had, but, still thinking the outcome would be a negative result.

Thursday, October 24, 1991, or, 10 24 91, as I have come to call it rolled around. I went to work, clocked in, and went about the usual routine of keeping the "girls" supplied with parts to assemble the picture frames. I had given the people I worked with a quick update as to what I had learned at my doctors visit a week prior, and, that there would have to be follow up visits, and that the itp was quite serious, and could eventually lead to me having to have my spleen removed if the medication did not work. There was concern, but everyone was updated, and the day went on as factory life does.  It was about 11:05 a.m. that I saw my supervisor coming toward me as I went about my job. He was on the floor to inform me that I had a phone call, that I could take in the office, and it was my Nashville doctor needing to speak to me about my visit a week earlier. I made my way to the office, where I was given privacy. I answered the phone. The doctor, who was treating me for the itp, said without hesitation. “Your hiv test is positive, you have probably 5, maybe 7 years to live, I suggest you find a doctor who will treat you".  The room appeared to spin, but, in slow motion. I could not believe what I had just been told. I began to cry, and at that point, my life began to spiral into pure sadness, and, a feeling of where do I go from here?

Somehow, I made my way out of the supervisor’s office, and back onto the workfloor to try and finish out the day. My co-workers could tell I had been crying, and that I was terribly upset. It was at that point I began to be make people believe that the phone call was about the itp, and that it was so much more serious than the doctor had originally thought, and that it would take some aggressive treatment to get things under control. I spent the biggest part of that day, in the bathroom crying, trying to process what I had just learned, wondering how I would ever be able to have a life again, or, if I even wanted a life. All I could feel was despair, and complete loneliness, needing to release my fear, and the shame was almost unbearable. I, had not only failed myself, I had failed everyone. I had always been a people pleaser, and now, I was someone, who, had allowed myself to become infected with a disease that I had felt only happened to someone else, in some other place, and would never be something I would have to ever deal with personally. My only thoughts were to somehow disappear without the truth ever coming out. I had not really accepted myself for who I was, and now there was AIDS on top of it all. How, or could I ever find the strength to go from this day.

I survived the day, made the decision to go tell my parents that I was infected with hiv, but, when I got to them, I could not bring myself to tell them, rather, I decided to let the disease take its course, and my life, and take it as soon as possible, without anyone ever knowing the real truth about me.  I did, however, tell the person I was seeing at the time, and just a few, close people I considered my friends. The next several days were long, the nights were sleepless, the tears many, and the overwhelming feeling of sadness, brought me to what I thought would be the breaking point. But instead, it would become the first steps of this 20-year journey I have been on. Somehow, I would find the courage and strength to turn it all around and love myself again, and accept myself for who I am, along with the responsibility of allowing myself to become infected with hiv.

The day of Halloween rolled around at work. I put my Dino costume on, my brave face on, and pretended to enjoy the day. Dino never looked this sad on TV, but, I tried to make it look like I was enjoying myself, while the whole time, I was trying to hold myself together to get through 1 more day.  This would become my mode of survival for the next almost 2 years. Pretending it was all alright, putting on a brave front, never letting my guard down so that anyone might suspect or find out about the "secret" I was carrying around. I described it at the time like a duck you might see swimming in the water, on the surface, everything appears to be going so smoothly, but just beneath the surface, its little legs and feet are paddling like crazy, just to keep moving. That’s how I felt, calm on the surface, but paddling like crazy, just to stay on course.  The issue with my itp was an off and on situation of rounds of steroids for awhile, then off them, only to be back taking them again once my platelet count fell to dangerously low levels. Eventually, on December 21, 1993, I went in the hospital to have my spleen removed, as a last ditch effort to resolve the itp. It has appeared to have worked, as there have been no problems as of yet now, some almost 18 years later. The hiv/aids issue was ever constant however. But, I did find the courage to reveal to my immediate family of what was going on, and the situation with hiv, but it would be some time before I would gather the courage to "come out" to the world.

On the day I got the call about my positive hiv test, I did have enough wits about myself to remember a lady I had heard of that worked with hiv and people who were living with it. After days of feeling sorry for myself and of running out of tears, I got in touch with Barbara, the one, in Cookeville, who would help me to learn to live again, by getting me involved in a support group for persons living with hiv/aids, and by helping get me set up with an infectious disease doctor with Vanderbilt hospital, who, would treat my illness with medication and great compassion. I was going through the grieving process for myself. The feelings of sadness, anger, deals with god, and onto acceptance of my disease. It was through these people and my own process, that I began to forgive, not only myself, but to forgive the person who had infected me, and realizing I had to accept the responsibility for my own actions in all this.

After having my spleen removed, and getting back to work, I was still processing and gradually accepting the disease I had, but, not before deciding to leave the job I had, due in part to the great amount of stress I was under trying to work, and trying to keep my secret from all my co workers. I had learned that stress was a thing I needed very little of in order to try and fight hiv, so, I made the hard decision to leave my job. I left my friends and my job on July 29, 1993. This began a new chapter. One that would bring me into the frontline of hiv/aids awareness and education. I would become the face of aids.

After leaving the job I’d been at for several years, I threw myself into my own recovery, for lack of a better description. It became important for me to take care of myself, not only my physical health, but, my mental and spiritual health as well. I took the medicines prescribed for hiv treatment, starting those on Christmas eve, 1991, and, having kept that going to date. I stayed involved in the support group, "circle of friends', I even volunteered for committees that helped to bring about education and awareness, along with federal money into my community. Maybe, I was finding my way out of the darkness of this terrible disease, or maybe it was just a good coping mechanism. It was within this time of moving forward, I met others who, were in the same boat as myself, in that we were in the same fight for our lives, with hope of somehow beating the odds of a disease that had no cure. It was here that I formed friendships, and sadly lost many as well. Sometimes, the old feelings of the early days of my diagnosis found their way back into my life. Mostly when word would come that so and so had died. It made the reality of aids very clear. The "hot" news topic had come home to the small towns and communities, yet, it was not perceived as such it seemed, because it seemed no one had really known anyone with aids.  This would soon change. The decision would be mine to make it a point to show others that the disease was real, and that it was taking many lives. Many lives lived and lost, under the disguise of cancer, and other illnesses, that were okay to talk about in public.

It was through my committee volunteering and the support group that I met people who inspired me, and offered me hope. It was these people at different points in my life that gave me courage to be me, and to make the decision to step forward and become one of the leaders for those who were afraid to come forward with their hiv/aids status for whatever reason. The time had come. There were 2 people in particular who made a great impact on me, other than Barbara and my hiv doctor. These 2 people were the main reasons I decided to be the "spokesperson" for hiv/aids awareness and education. Debbie and Steve, both of whom have now passed from this life, and walked the path I now walk, showed great courage in the face of this disease. I held Steve’s hand as he was dying, and it was during this time that he and I discussed the need for someone locally to not be afraid to come forward with their hiv status, and to speak for those who could not or would not, for whatever reason. It was Debbie, who, like me had dealt with itp, and hiv, who, was the one in the Nashville area, who went "public" with her status. It was she, who stood with me in Cookeville on more than one occasion as we told our stories of living with hiv and aids.  On world aids day, December 1, 1994, I was the featured speaker at Cookeville regional medical center, for the community wide world aids day. The little shy farmboy I had been, stepped into the spotlight that day to say I have hiv disease. My story, along with my picture was featured in the local herald - citizen newspaper that day, I did radio shows, and was on the local TV station discussing   what life was like living with hiv. No one else had done it before me. I did not know what to expect after everything was put out there in such a public way, but I knew there was no turning back after that.

In the days that followed my "announcement", I began to hear from people who I had worked with, some sent cards and letters; some I ran into at various places gave me hugs.  But all, was not what I guess I had hoped for, not really even sure what I’d hoped for, but there were those who called me "crazy", some, who no longer wanted to be around me, some, who said I deserved death and that hell was the place for me and people like me. It was a time when some people did not know what to say, or how to react toward me. It was a time when I went full force into speaking out and doing whatever I could to show people that hiv and aids was all about, and that it was time to show compassion, and to educate themselves. It was also a time for me to see just how far I had come in my journey, and to realize that I was worthy as a human being, and to finally be open about who I was and that it was okay to be me. I won't say it was all easy, nor will I say I might have done some things differently. But, I will say, it all has made me who I am today.
This October 24, 2011, marks the 20th year anniversary of my hiv positive diagnosis. 10 24 91, as it has come to be known is a date that sticks in my memory as a date of much pain, sadness, and uncertainty for me. It also has become a starting point on my journey of self acceptance, forgiveness (for myself and others) and a better understanding of those around me that have either embraced me, or, those who, have due in part to their own ignorance or lack of understanding chose to turn away from me. Living with hiv, and now aids for about 22 years now, in many ways has been a blessing, in that it has allowed me to see life in a whole other light, something that many still don't get, or, never will. I still see the same doctor I first saw from Vanderbilt back in "91". He is a great man, and I’ve had a great team of caregivers all these years. I, for the most part, continue to do well, although, I can see the affect the disease, and in some cases the medicine I take to help control it, have had on my body.  I never thought 20 years ago, at almost 30 years of age, I would live to see 50, but, its in sight. I have scrapbooked my journey of 20 years, along with journal entries about events of what its like to live with a disease with no known cure, and sadly, still with a certain amount of stigma. Someone once told me, "There have always been survivors of every disease and epidemic".... I suppose that might be true. I can say, I’ve been a 20 plus year survivor of this disease that continues to impact our world. What a journey it has been.
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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