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Author Topic: Sharing my HIV status with my family?  (Read 502 times)

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Offline Isma95

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  • Posts: 7
Sharing my HIV status with my family?
« on: August 07, 2019, 08:21:35 am »
Hello everyone,

I have posted topics a couple times before on this forum but always related to my treatment or diagnosis. This time I am looking for advice...

I am a 23 year old homosexual male, and have been HIV+ on treatment for about a year now. So far I have only shared my HIV status with very close friends whom I really trust and I did it because I knew for sure that they would support me.

My situation is this: I live relatively far from my parents and my family (I have my own job and pay my rent, so I am 100% independent economically). It has actually been very easy to keep my status secret until now. However, every now and then I go visit them, and I am always very afraid that they might find out if they see my meds.

My point is that I am not sure if I want them to know... because they don't know much about HIV and they would definitely be very concerned, probably thinking that I would be going to die at a young age or something. I know that they would also feel very bad for me or even guilty for them (they never talked to me about sex lol). That is why I have not told them anything, because I think that it would only make them suffer, and I don't want that. But on the other hand I don't feel good having to keep my situation secret or knowing the risk of eventually being discovered. If they had to know, I think it would be much better to tell them.

What would you do in my situation? Would you tell them, keep it secret or wait a few years to 'prove' that this is not going to kill me? I also feel that the more time that goes on the harder it will be to tell them.

Thank you  :) :D
10/15/2018 - Tested HIV+
10/18/2018 - HIV+ Confirmed
10/22/2018 - VL 126,500; CD4 294 (15%); CD4/CD8 47%
11/06/2018 - VL 104,400; CD4 396 (18%); CD4/CD8 47%
-> Started treatment with Prezcobix+truvada
02/26/2019 - VL UD; CD4 675 (25%); CD4/CD8 81%
-> 04/09/2019 Switched to Tivicay+Epivir

Offline Isma95

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  • Posts: 7
Re: Sharing my HIV status with my family?
« Reply #1 on: August 07, 2019, 08:23:19 am »
I think I didn't make it clear enough: I live in a different city which is like 7-8 hours drive from theirs, that is why when I go visit them I stay for a few days and have to bring my meds.
10/15/2018 - Tested HIV+
10/18/2018 - HIV+ Confirmed
10/22/2018 - VL 126,500; CD4 294 (15%); CD4/CD8 47%
11/06/2018 - VL 104,400; CD4 396 (18%); CD4/CD8 47%
-> Started treatment with Prezcobix+truvada
02/26/2019 - VL UD; CD4 675 (25%); CD4/CD8 81%
-> 04/09/2019 Switched to Tivicay+Epivir

Offline leatherman

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Re: Sharing my HIV status with my family?
« Reply #2 on: August 07, 2019, 09:43:10 am »
how many pills do you take? when do you take them? will your family actually see you swallow the pills? you could always stop in the restroom after a meal and take your meds if you need to take your meds with food.

Quote
because they don't know much about HIV and they would definitely be very concerned, probably thinking that I would be going to die at a young age or something.
I think most of our parents thought/think that way. I have found that most people don't know much about diseases that don't affect them or their immediate family. Most people don't know about cancer or treatments, diabetes, or many other illnesses - until it affects them. Your parents have probably rarely thought about HIV and when they did it was a mish-mash of (outdated) scary images from the mid-90s and probably no real data or information about this disease and it's treatment.

So if you feel up to it, you could just do what you normally do with your meds and, if they ask, use it as a teaching moment to educate them on how HIV is manageable with daily medications.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Mindless

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  • Posts: 164
Re: Sharing my HIV status with my family?
« Reply #3 on: August 07, 2019, 10:22:27 am »
how many pills do you take? when do you take them? will your family actually see you swallow the pills? you could always stop in the restroom after a meal and take your meds if you need to take your meds with food.

Thatís what I usually do, cause I need to take them with food. Sometimes I even took them in front of people like it was paracetamol or else. Nobodyís ever asked. If I think they may wonder I make up some story: paracetamol, anti-cholesterol, meds for asthma control... whatever.
But thatís because in my personal case I decided to tell only my wife and nobody else... many reasons for that unfortunately but I prefer like that for now.

In your case I wouldnít know what to say, there are so many different factors that can affect the decision... If my parents were still alive I wouldnít tell my mother for instance (she was severely ill) but maybe Iíd tell my father... maybe. I have 2 sisters who live in another country and I didnít tell them: too scared both of their judgement and to hurt them.

Hugs

Offline Jim Allen

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Re: Sharing my HIV status with my family?
« Reply #4 on: August 07, 2019, 12:20:26 pm »
Hiya,

Everyone knows I am living with HIV, although I'm long past the point of caring what people think. Understand fully that everyone and, their lives are different.

Quote
I don't feel good having to keep my situation secret

Why view it as a secret to start with? It's a private manageable medical condition. Nothing wrong with keeping a private medical condition private, plenty of people do it for plenty of manageable conditions they have even from family members.

You are taking a pill or two right, surely you must get the opportunity for 2 mins of privacy whilst at your parents to take the meds? They don't go through your bags/pockets either?

On the other-hand sharing your status, some people gain great strength & support from sharing (I'm not one of them) and I do agree with leatherman that people often know little about things that don't affect them, I've found that even people who hard certain views changed their minds after hearing about living with HIV from someone first hand.

Up to you but whatever you decide to stop feeling bad about having the right to choose privacy. Secrets are negative, on the other hand, privacy is a basic human need if you ask me.  ;)







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Offline bocker3

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  • Posts: 4,231
  • You gotta enjoy life......
Re: Sharing my HIV status with my family?
« Reply #5 on: August 07, 2019, 03:01:39 pm »
I told my family fairly soon after diagnosis -- within the first 6 months.  Here's the thing, none of them, not one worried about me any more than they did before (we all know how Mom's like to worry about kids, no matter what).  I told them I was positive, I was on medication and that this should keep me healthy well into old age.
Not having secrets from those I love makes life that much better.  I knew this to be true because I hid being gay for soooooo long, it was so freeing when I came out.  Of course, I wasn't as hidden as I thought, as a couple of people's reaction was -- "glad you finally figured that out!!!!"

Ask yourself this -- if you had a 23 year old son, would you want him to tell you if he was positive or would you want to stay in the dark??

At any rate -- it has to be your decision.  You know your family, I certainly don't -  but remember, that we generally assume the worst when wrestling with the question of disclosure, but in my experience, we almost never get the worst. 

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2015 969/28% <20

Offline MarkintheDark

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  • Posts: 134
Re: Sharing my HIV status with my family?
« Reply #6 on: August 08, 2019, 09:15:11 am »
This is a highly personal decision, Isma, and you're the best judge on how they'd handle it.

Perhaps as one indicator, are you out to them as a gay man?  If so, how did they handle it?
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline Mindless

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  • Posts: 164
Re: Sharing my HIV status with my family?
« Reply #7 on: August 08, 2019, 09:52:56 am »
Also...

if you decide to disclose I suggest you donít act on an impulse but you take your time to ponder if thatís really what you want for yourself and other people involved.

IMHO, of course.

Hugs

Offline terrymoore

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  • Posts: 471
Re: Sharing my HIV status with my family?
« Reply #8 on: August 08, 2019, 10:12:56 pm »
Hi,
In my case, i have kept it PRIVATE (thanks for the good terminology Jim Allen!) for almost 5 years. I visit my family twice a year and stay with them for 2 weeks at a time. I am usually with my work colleagues in a hotel for BF when i take my meds and i too, like Mindless, just pretend they are a regular pill - like a vitamin or statin or whatever. I normally just walk to the side and take them or go to the room. I have my pills in a pill box for the week in a side pocket of my luggage bag. When at my parents place, i also bury it in deep and when away for a long time i just lock the luggage...if they ask why, i say i have some money in there and it is a habit from traveling.
My point is, it is technically easy to keep it private. It seems to me, though, that you are struggling with the psychological aspect...am i right?
Some people cannot "hide" things from people they are close to. My wife struggles with this....keeping this private affects her and manifests itself in many ways...she needs someone to talk to, but, together, we have decided to keep it private. She is paying a price and i feel bad for being the cause...life is not simple after all..
Just remember, we never know how people react to certain things. I know, for me, before i was poz, i would have stayed away from anyone who was poz. I was ignorant and not interested in learning about the topic nor "taking any chances"... I am pretty sure my brothers and sisters (in-laws) and maybe even my parents would feel similar...
I have younger nieces and nephews and am sure if my immediate family knew, they would not want me playing with the kids.
Moreover, i am sure they would be worried sick, even if they said they were not. I saw no reason to share this with them - no need for them to worry for no reason.
"How are things son?" "Things are GREAT Mom!"...life is simple.
IMHO - keep your medical condition private unless there is a real practical need to share (sometimes people need to share to relieve psychological pressure - this is a real practical reason - just not for me).

Offline JosephP

  • Member
  • Posts: 270
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Sharing my HIV status with my family?
« Reply #9 on: August 08, 2019, 10:29:23 pm »
 :) :) "It has actually been very easy to keep my status secret until now. However, every now and then I go visit them, and I am always very afraid that they might find out if they see my meds." And still will be very easy... Go to a restroom and take your pills.. Do it really quick right in front of them... My parents don't know either but they have never seen me taking my meds!!!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline harleymc

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  • Posts: 1,205
Re: Sharing my HIV status with my family?
« Reply #10 on: August 09, 2019, 04:34:17 am »
I'm not sure why anyone would not want their fa.ily to learn about HIV.

Offline wardp

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  • Posts: 130
Re: Sharing my HIV status with my family?
« Reply #11 on: August 13, 2019, 01:15:43 pm »
I was visiting my family last week.my bottles pills were locked in my suitcase and I had 7 day pill box quite openly on the bedside table. I'm on statins bp pill and unless your nosey or a pharmacist nobody can tell one pill from another so once they don't see the bottles I'm not bothered.
Diagnosed 20,July 2017. Cd4 289, 21% vld .3,462 Started atripla 4 Aug 2017 5oct 2017 cd4 384 21%, vl ud less than 20. Switch to complera 4 Nov 2017 switched to stribild 15 the Nov. Switched to truvada efavirence 200mgx2 14 Dec 2017, 2 Feb 2018, us cd4  466, 25%  CD 8 ,595, 32%..1 may 2018
switched  to instgra truvada.7th june switched to truvada  nevirapine stavudine. .21 june switched to truvada nevirapine. X 2 a day...9 aug 2018 ud. 2n Nov 2018 CD 4. 455..22.70% 13th Nov switched  to lamivir and nevirapine  due to kidney issues...jan 10,2019 UD..may 13 2019 ud  cd4 482 28%

Offline TabooPrincess

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  • Posts: 308
Re: Sharing my HIV status with my family?
« Reply #12 on: August 13, 2019, 01:57:19 pm »
I swore over a decade ago that I would die with my secret (only my partner knew)
That ate me up inside.
Gradually I told close friends generally when I was very very low or drunk.
My mum found out by accident which was horrific.
The summary is that after some horrendous disclosure paranoia not one single person gives a shit now and they even simply Ďforgetí. My mother is slightly different and taking longer to come to terms with it all (the lies mainly).
But ultimately itís been better for mental health not to keep the secret, to feel that Iím
Not dirty or need to be ashamed in any way.
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline TabooPrincess

  • Member
  • Posts: 308
Re: Sharing my HIV status with my family?
« Reply #13 on: August 13, 2019, 02:03:05 pm »
Oh and Iíve always decanted my pills into an old bottle of kelp tablets (which are big stinky things), nobody has ever opened them or asked but just assumes theyíre just part of whatever fad diet Iím on at the time!!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline wardp

  • Member
  • Posts: 130
Re: Sharing my HIV status with my family?
« Reply #14 on: August 14, 2019, 09:13:16 am »
my reason is to protect my family.ireland rural can still be unforgiving and stigma and ignorance still exists.
.
Diagnosed 20,July 2017. Cd4 289, 21% vld .3,462 Started atripla 4 Aug 2017 5oct 2017 cd4 384 21%, vl ud less than 20. Switch to complera 4 Nov 2017 switched to stribild 15 the Nov. Switched to truvada efavirence 200mgx2 14 Dec 2017, 2 Feb 2018, us cd4  466, 25%  CD 8 ,595, 32%..1 may 2018
switched  to instgra truvada.7th june switched to truvada  nevirapine stavudine. .21 june switched to truvada nevirapine. X 2 a day...9 aug 2018 ud. 2n Nov 2018 CD 4. 455..22.70% 13th Nov switched  to lamivir and nevirapine  due to kidney issues...jan 10,2019 UD..may 13 2019 ud  cd4 482 28%

 


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