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Author Topic: What do you tell people?  (Read 4913 times)

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Offline just-hopeful

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What do you tell people?
« on: April 30, 2015, 03:09:27 am »
Many of you have seen my post & updates about my boyfriend (NKB) being in and out of the hospital lately. I was just wondering, what do you tell people when you're in and out of the hospital because of HIV/AIDS but you do not want to disclose your actual diagnosis with them (not that I would tell people his business without his consent)? I have taken a lot of time off work and people at my job are always asking me for updates as well as family and friends and after it being over a month I feel they are going to start realizing it's something MORE. So just wondering if there is a good "lie" that I can tell or something commonly used in this type of situation.

Offline Jim Allen

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Re: What do you tell people?
« Reply #1 on: April 30, 2015, 03:49:02 am »
Well I've always been honest about it being HIV and HIV related illness. I spent 4 weeks in hospital last year.

However my sister and mother when she was asked at the time told people it was leukaemia.
It fitted the weight loss,bald head and general sick look I had she said. I told them that was fine if they were uncomfortable with the truth but it was okay to tell the truth as far as I was concerned. Since then I think they just tell the truth if asked.

My ex brother in law says it's "autoimmune disease" and acts vague if he asked.
That's up to him what he says i suppose.

Hope that helps or gives food for thought and wishing you both the best.

Jim

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Offline just-hopeful

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Re: What do you tell people?
« Reply #2 on: April 30, 2015, 03:54:20 am »
For the most part I had been telling people that he has pneumonia and an idiopathic immune deficiency making it hard for him to get over the pneumonia.

I am all about being honest & up front but that's for him to be honest with people about, not me. and honestly it's not everyone's business. I understand people want to send well wishes and prayers and what not and I appreciate their thoughts and concern so I don't want to be rude and be like "It's none of your business." or something like that. So I figured surely other people have been in this situation.

Offline zach

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Re: What do you tell people?
« Reply #3 on: April 30, 2015, 08:57:14 am »
It's a difficult situation, made that much harder by the hospital stays. You'll see the advice given often around here when it comes to disclosure... proceed with extreme caution, and go slow. Once that information is out there, it is out of his/your control. Everyone you tell, will tell two people, and so on ad nauseam.

Unasked advice follows.

Don't disclose without his knowledge and consent.... period. I have have a family member that did that to me. Our relationship will never be healed from that betrayal.

Also, don't push him to disclose. In time, if he comes to that point, it's an empowering thing to do. But once done, it can never be undone. He needs his strength now.

And... it's time for you to go back to work and move on with life. I know it's have felt like you're on a deathwatch, but you know now that's not the case. Don't let this first fight with the disease derail y'all from the tracks.

Offline leatherman

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Re: What do you tell people?
« Reply #4 on: April 30, 2015, 10:12:01 am »
there's always two sides to any discussion, so let me mention the other side.

When I was in the hospital, everyone I knew (friends and family) were told I was about to die of AIDS. I had such support as so many people visited me there in the hospital. So when I left the hospital, very much still alive, it meant my status was now common knowledge.

What a freeing experience! I've always been an honest person, and been pretty self-confident, so taking control of my life, my story and my status, meant I embraced the situation of having my status fully known. People who weren't really my friends left and those who were my true friends were closer than ever. Since then I've never gone back into the HIV closet and I've lived an openly HIV+ life for over 20 years now. Not only has this mad it easier to do my advocacy work, but I don't have any of that self-induced stigma which would cause me to lie to friends or keep my status a secret.

Of course, not everyone should totally disclose, but don't discount it as option.  ;) While you certainly should not disclose his status without his permission, you two should certainly discuss the entire situation, including not disclosing and the other extreme of being open about his status.
leatherman (aka mIkIE)

Offline just-hopeful

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Re: What do you tell people?
« Reply #5 on: April 30, 2015, 01:40:19 pm »
And... it's time for you to go back to work and move on with life. I know it's have felt like you're on a deathwatch, but you know now that's not the case. Don't let this first fight with the disease derail y'all from the tracks.

I am not actually off from work. I took off when he was first diagnosed but my job has been letting me work from home, the hospital or where ever I'm at as long as I have an internet connection. I'm not in a financial position to not work. lol

Offline mecch

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Re: What do you tell people?
« Reply #6 on: April 30, 2015, 02:49:01 pm »
Yes obviously you can't disclose on his behalf. 
I said I had "viral meningitis" when I seroconverted and was really sick. The experience was quite similar to meningitis, so that worked fine.
He's been out of commission for awhile. Isn't saying pneumonia sufficient? Ok, if not add on pneumonia "with pleural effusion".  That would set anyone up in the hospital for quite awhile.
Keep on trucking.  ;D
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline wolfter

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Re: What do you tell people?
« Reply #7 on: April 30, 2015, 04:00:19 pm »
One of the best pieces of advice I was given in the 80's still holds true for a recent diagnosis.

It's a "need to know" basis at first.

There is no right or wrong way, simply our individualist ways. 
Being honest is not wronging others, continuing the dishonesty is.

Offline ImisstheOldTimes

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Re: What do you tell people?
« Reply #8 on: May 01, 2015, 08:09:27 am »
Yeah, my dad did not want the HIV/AIDS thing being the issue why he was in the hospital either, usually we were vaguely honest, he had pneumonia or his immune system was lowered by Remicade (sp?) - and so he had a hard time shaking things.  Both of which are true, but are not the underlying reason why he was so ill.

Now when people ask me what he passed from, I usually am very honest for two reasons - 1. It's easier to honest; 2. It gives me an opportunity to educate a person regarding the current state of HIV/AIDS verses their preconceived notions of how it was in the 80's/90's.

All my best to you both,
Heidi
Life is a BANQUET, and most poor suckers are starving to death!

                             ~Auntie Mame

Offline just-hopeful

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Re: What do you tell people?
« Reply #9 on: May 02, 2015, 07:04:39 pm »
He's been out of commission for awhile. Isn't saying pneumonia sufficient? Ok, if not add on pneumonia "with pleural effusion".  That would set anyone up in the hospital for quite awhile.
Keep on trucking.  ;D

You'd think saying pneumonia would be sufficient....  :-\ He was moved out of ICU today to a regular floor room.

 


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