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Author Topic: Disclosure  (Read 3873 times)

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Offline Will1767

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Disclosure
« on: April 12, 2016, 11:25:41 pm »
Hi -

48 years old here. Two long term relationships (eleven years each). Then BAM! one unsafe act later and three and a half months ago, diagnosed positive.  Quite the shock and still trying to wrap my brain around it. Haven't even told my grown children.  Keep a list of people told, and it only has seven names on it and two are doctors. Health in check with a CD4 of 704 and UD. Taking Triumeq.

Anyway, 80's boy here, and shocked and confused by some people's mentality that one pill a day and your good.  Figured it would be a painful death sentence, but apparantly not so much. However, After reading some of the forums, I am a little bit back to being scared of the future.

After a terrible, unexpected call from the Department of Health, I feel my private life will now always be invaded.  It leaves me at a loss as to who to disclose to, when, and how much.  Have pretty much always been an open, honest person who discussed most of his life to just about anyone whether friend, family or co worker.  Now I find myself closed to the point that people are asking what is wrong with me.

On top of trying to find my new normal, I have now been asked out on a date, and find myself scared as hell.  What can I do via kissing if it gets there. Do I disclose before that? How long should I know someone?  is it fair to them to let them get invested before disclosure to ultimatly experience the probability of their rejection?

What about friends?  Will they be pissed becuae i didn't say anything if they find out or that I didn't tell them sooner?

Famly:  Should I tell them? Not really close to any of them except my daughters and grandson.

Co-workers:  Is it normal to wonder after passing them in a hallway what they would think or how they would react if they knew?

What professionals do you tell?  Dentist, eye doctor, massage therapist, foot doctor, personal trainer?

Sorry to ramble. Just constant thoughts that seem to go unaddressed. Thought about seeing a therapist, but don't feel they are going to be spending their time offering useful information on this topic.  Probably wrong.

Any way, any suggestions where to go for this information, or personal experience to help me?  I have always been a very structured, detailed, organized person with a constant plan on how to deal with things and now I find myself navigating a new, unpredictable virus and world.

Thank you in advance, Will

Online Jim Allen

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Re: Disclosure
« Reply #1 on: April 13, 2016, 03:52:03 am »
Hi

Welcome to the forum.
Glad to hear your on meds and doing well.

Disclosing ... well people like friends, family, co-workers, massage therapist, personal trainer is a strictly a personal choice, there is no requirement or need to do so. I don't see why any of them should or need to know. Just be aware that once you tell people you have told them, it can't be undone and people do talk.

As for dating, I don't disclose on the first date and kissing is not an issue. See I might after the first date decide not to see the person again so no point in disclosing to them. I do however disclose if I'm going to have sex first date or otherwise. Depending on where you live some places have laws relating to disclosure before sex.

The lessons on Poz.com is a good place to start for information and so is this forum. https://www.poz.com/basics/hiv-basics/newly-diagnosed

I'm sure other members will chime in on you thread.
Anyhow welcome to the forum and if you have any questions just ask.

Jim

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Offline Will1767

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Re: Disclosure
« Reply #2 on: April 13, 2016, 06:02:11 am »
Thank you Jim. I truly appreciate your response.

Offline leatherman

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Re: Disclosure
« Reply #3 on: April 13, 2016, 07:04:33 am »
Anyway, 80's boy here, and shocked and confused by some people's mentality that one pill a day and your good.  Figured it would be a painful death sentence, but apparantly not so much. However, After reading some of the forums, I am a little bit back to being scared of the future.
 world.
Don't freak out by the posts you read here sometimes. A lot of people who come here, stop by because they are having issues or questions. There are a helluva lot more people who never come here because they simply aren't having issues and don't need support or answers.

Actually here in 2016 it really can be as simple as take one pill a say and you're good.

when you worry about these things, just keep telling yourself this is 2016 and not 1994 - and it's certainly not the 80s anymore. Thirty plus years of this epidemic has lead to huge improvements in treatment.

After a terrible, unexpected call from the Department of Health, I feel my private life will now always be invaded.
HIV is a contagious disease and Health Dpts track this epidemic trying to use prevention and treatment to stop the spread. Your local health dpt needs to know that you are in treatment and understand the importance of treatment and not spreading the disease. Health dpts also do contact tracing to inform others that they may have had contact with someone with HIV so that those people will also get tested. This is just one of many interventions that help find HIV+ people and get them into treatment.

What about friends?  Will they be pissed becuae i didn't say anything if they find out or that I didn't tell them sooner?
If they are good friends they probably will be upset that you felt you couldn't trust them. However, if they are really good friends, they will understand when you tell them about your fears (about the disease and about how others will treat you)

Co-workers:  Is it normal to wonder after passing them in a hallway what they would think or how they would react if they knew?
A lot of stigma is actually internal. We imagine what others will say and do about our status, our pill taking, our doctor visits, etc. None of us though is walking around with a big red "H" on our foreheads. And here's an interesting thought - wonder what secrets (health or otherwise) your co-workers are walking around with? While a lot of people do talk about their health issues, not everyone does, and not everyone cares. As time goes by, and you get adjusted to knowing your HIV positive status, you'll find that you don't give a rat's ass about what anyone else might be thinking.

What professionals do you tell?  Dentist, eye doctor, massage therapist, foot doctor, personal trainer?
Every doctor you see! Dentist, optometrist, general practitioner, ER nurse, etc. Every time you access health care, your provider needs to know. Your disclosure will ensure that they also look for HIV-related issues whenever they are treating you.

I have always been a very structured, detailed, organized person with a constant plan on how to deal with things and now I find myself navigating a new, unpredictable virus and world.
stay adherent to your meds, enjoy your life, and plan for your retirement. It's really that simple.
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline Will1767

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Re: Disclosure
« Reply #4 on: April 13, 2016, 12:42:22 pm »
Thank you very much for taking the time to write!  I appreciate it. Sound advice to live by. I will do my best!

Offline leatherman

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Re: Disclosure
« Reply #5 on: April 13, 2016, 02:42:50 pm »
Thank you very much for taking the time to write!  I appreciate it. Sound advice to live by. I will do my best!
no problemo!

Make sure to look around in the forum here. When I talked about why peeps came to the forums, I didn't mean to dismiss their issues. Lots of people come here with lots of questions or issues, get their answers and support; and then drift away (life often gets in the way, you know, in a good way ;) ) or hang around for a while to chat. The very good thing right now is that more of the questions are about living with HIV than about what med is coming out next to keep us from dying from AIDS.

Here in 2016, a lot of us have been through some of the exact issues you're dealing with - discussions about disclosure, living with HIV, dealing with the mental issues about living with HIV, those health dpt visits, the flu shot LOL, meds, side effects, etc. At first there's a huge learning curve about the meds, HIV, and what YOU need to do or should do. Luckily, there's a lot of advice and support you can find here. ;)
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline CaveyUK

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Re: Disclosure
« Reply #6 on: April 13, 2016, 03:06:50 pm »
I'm fairly recently diagnosed, and I live in the UK - so don't have this Health Department follow-up thing.

I have only disclosed, not including my HIV treatment team, to two people... my girlfriend, and my best friend.

I take the view that I will only disclose to anyone on a 'need to know' basis, and that includes my family. Actually, I do plan on disclosing to my mum and dad but only at a point where I know my numbers are good, I've been undetectable for a while, have wrapped my head fully around all this and I've made some positive life changes. So probably some time off :)

The best advice has already been mentioned. You can't 'undo' a disclosure. Once you have said it - it's out there and you no longer have control. So consider this carefully.

As for health specialists, the universal recommendation is to inform GPs, Dentists etc. Personally speaking, I still struggle with this idea - partly because I live in a fairly small town and don't trust the non-health specialists in the local places to have discretion - and partly because I don't really have a named GP I always use and historically I have only ever been to the doctors for mundane things (and hope this continues!).

My HIV doc recommended letting them know, but did say that it is entirely my choice. There is a website the NHS GP's use to check for contraindications, which can be accessed publicly so I can check anything prescribed myself and I am lucky to be on a regimen with very few (relative) contraindications listed.

The Dentist is a thornier one however - as many issues with HIV can manifest in the mouth. I have a new dentist allocated (the old one left) and have an appointment next week, so will see how I feel with the view of disclosing at some point in the near future, if I can get over my fear of the receptionists or assistants chattering...

Obviously, all the above is null and void if I develop any significant issue where disclosing would be instrumental in their diagnosis.

At the end of the day, disclosure or otherwise is purely a personal choice. And everyone will have their own take on it.

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Offline Will1767

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Re: Disclosure
« Reply #7 on: April 13, 2016, 09:53:04 pm »
Thank you Leatherman for your addendum.  Valuable information, and I was up until 1 a.m.last night reading through much of the material on the site.  I am amazed at the information.  I also was able to read through some more of the forums.  I am a firm believer that there isn't much a person can go through that someone else hasn't already experienced.  it is a wake up call when you see it in writing on this site.  It certianly provides one with hope, answers and a little more piece of mind. - Will

Offline Will1767

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Re: Disclosure
« Reply #8 on: April 13, 2016, 10:01:36 pm »
Caveyuk -

Thank you so much for your post.  I hope you will keep me posted on your visit to your dentist.  I have an appointment in a month and a half and also struggle with the receptionist and staff running their mouth in our town or even among eachother.  I have thought to myself, well they practice universal standards, so why should I put myself through that.  ugh?  The eye doctor is another one I have an appointment with soon.

And as I write about disclosure I feel a bit guilty, but it seems like a first world problem when I read about some of the other things people are going through. I feel very fortunate to at least be in a stable, healthy place, but at the same time feel like my current issues do not rank with the others.  I am not normally that popular, and yet in the past two weeks, I have had three people want to set me up on dates.  I of course am freaking out over it, becuase the people wanting to set me up do not have a clue and I don't want them to have a clue. Meanwhile, if I go out with these other people, and I disclose, they will then tell the friends.  So I agree with you, I lose the control.  So do I just not bother and make some excuse to not date? Again, first world problems and am sorta ashamed to put this issue in writing; however, it nags at me.  I dont know how to handle it, and figure someone else must be going through this or have gone through this and can give some advice. Will

Online Jim Allen

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Re: Disclosure
« Reply #9 on: April 14, 2016, 02:59:14 am »
And as I write about disclosure I feel a bit guilty, but it seems like a first world problem when I read about some of the other things people are going through. I feel very fortunate to at least be in a stable, healthy place, but at the same time feel like my current issues do not rank with the others.

First world problem statements ...  Everything in your life will be a first world problem. Getting run over by SUV is a first world problem apparently. Now see I'm all for having a bit of perspective and that's one thing, however dismissing, not voicing a personal concern or dealing with an issues just because someone else has it worse off is something different. If this is an issue or a concern for you or something you need to talk about it by all means do, we are here to support each other so feel free to ask and voice your concerns as it effects you and don't feel guilty about talking / writing about it. Talking about issues and than facing them is a mature approach.  Trust me someone else will always have it worse off, it does not change what you are dealing with or facing.

The dentist, to be honest where I am things work differently from where you are located. However you are new to this and if you don't want to mention it at this stage / this time round you are correct they should be using universal precautions.
It understandable that you have concerns and maybe you are not ready yet to say it out load so don't push or force yourself if you are not ready and don't have to. You will be more comfortable down the line. Also instead of telling the receptionist if you do want to tell the dentist the other way of doing it is to tell the dentist when you see them.

Jim   
« Last Edit: April 14, 2016, 03:18:02 am by JimDublin »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Will1767

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Re: Disclosure
« Reply #10 on: April 14, 2016, 05:35:42 am »
Jim,

Thank you so much for your thoughts!!  truly appreciate you helping me put my thoughts and fears into perspective. And your suggestion to tell the dentist directly is very helpful. I dint think about that. - will

Offline PittGurl

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Re: Disclosure
« Reply #11 on: April 15, 2016, 12:26:00 pm »
Will i could have written most of your post....im new to this - just under a year :( I have a list of 17 people - most are dr's, others are family and the few left are friends and 2 relationship disclosures. I also take Triumeq.

My mind goes a mile a minute in thinking everyone can see right through me and i have a BIG stamp on my forehead....Im slowly trying to work through that - im a small town girl in an even smaller rural area. The part that gets me is that do Dr's already know - is there a FLASHING warning when i got to any dr, dentist, etc? since everything is electronic, i just wonder how much is foretold to any given place.

I just went through 2 disclosures - completely opposite reaction in the past 4 weeks. The first one played out with the guy wanting to come with me to dr appts and get educated and it didn't bother him at all - although it didn't work out for other reasons. The 2nd one - that "we'll always be good friends" came out. Amazing that i had 2 interests....LOL....black and white (literally!) hahaha

I too struggled with when to tell someone. I mean looking back I dont think i would be too happy to be locking lips with someone that didn't disclose even though i KNOW i KNOW i KNOW i KNOW that isn't a way to transmit - i just know that people can get wigged out pretty easily and i dont want to suffer backlash. So I tend to think about pre-DX for me and what would i want. I would want to know when I knew that person had an interest and not to waste their time or their money on me - taking me out, courting me.  If i wasnt comfortable disclosing i probably would push them away anyways. I'm not too much into love em and leave em so most guys I would think to date would be a longterm and would hopefully establish some trust. The 2nd guy that did the "Friend" line - yea it kinda hurt- felt rejected - i had hoped to have the same reaction as the guy prior.

Family - I have only told my brother and his wife and my parents and 2 cousins. Reason being - what would it really benefit doing a family announcement. My family isn't that close. I just wanted the close ones to know in case of ER situation and to support me. (im a single mom)

Friends - i probably have disclosed to about 5 - ALL were supportive -there are a few on the fence that I am considering telling but i need to feel them out on their life values- amazing what this DX makes you consider that you never did prior! 

Coworkers - i work from home LOL ....but i think i would also wonder - what do they see? what would they think? would they no touch the door handle? would they ask questions to educate or would they make smart remarks?

So i probably didn't help much - but i am on the same wave length as you :) I think all of those things....and probably more - i analyze everything LOL
Infected ~5/16/15-7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Pos Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq…. HOLY COW it's working!
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 mo on Triumeq
4-27-16    CD4=580; VL=UD; 32% almost 8 mo on Triumeq
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/18   CD4=893; VL=UD; 39%
8/9/18   CD4=858; VL=UD; 41%
12/27/18   CD4=841; VL=UD; 41%
4/24/19   CD4=751; VL=UD; 39%
8/27/19   CD4=719" VL=UD; 36%

Offline heretolearn

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Re: Disclosure
« Reply #12 on: April 15, 2016, 01:17:02 pm »
I live in a small town in the south where people are very uneducated and closed-minded. I didn't tell the eye doctor.
My mom, doctors in the city, my husband, and a chick online know. I cannot tell anyone else and I'm so scared they will find out. If I wasn't married them I would probably become a lesbian because I feel like that would be safer and she would probably have an easier time when I told her. I'm so glad my husband isn't afraid of me.
12/16/15- Dx&Pregnant
12/21/15- Cd4- 39% 902 Vl- 700
1/4/16- started Complera
1/25/16- Vl- 30
2/22/16- Vl- UD
3/14/16- Cd4- 42% 952 Vl- UD
6/16- cd4- 1218 vl- ud

Offline Will1767

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Re: Disclosure
« Reply #13 on: April 17, 2016, 09:53:20 pm »
Thank you heretolearn.  It is a whole new world out there and navigating is going to be tuff.  I actually wrote and saved a canned, online response today becuase I am getting tired of repeating myself, and I am only 3.5 months into this.  Ugh!

Offline Will1767

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Re: Disclosure
« Reply #14 on: April 17, 2016, 10:05:15 pm »
Pittgurl - I think we are on the same wave length too.  I feel like you do about the kissing and disclosure, that if I were in the other person's shoes, I would want to know upfront.  I was rejeted this weekend on a date who said we could be frineds.  I didn't plan to disclose, but then it began to get hot and heavy.  At first I wasn't even planning on kissing, but they kept asking what was wrong.  Then I thought, if I act like it is wrong, then they will take me lead.  Still didn't work out.

I went on a few dating sites, didn't post my face.  When they asked for a pic, I sent a response about being positvie and health to end up getting blocked or a simple thanks for being responsible.  I found myself struggling with disclosure on the onset as opposed to chatting and then disclosing or even having a face picture and disclosing up front.  My nieghborhood is small.  I have many "friends" in my neighborhood.  So showing my face picture and posting I am poz wold spread like wildfire.  I got tired of retyping the same message of disclosure; so now I have decided to not show my face, and send a canned message when asked for one that I am poz, undetectible, healthy, that it is important they now their status, that I am limiting the amount of disclosure becuase people can be hateful and that if they are certain they want to meet for a drink after reading the message, then I will be happy to send a picture.  So far, those that have received this message have sent a polite reply and declined.  So at least my face hasn't been seen.  Probably not the best approach, but it is helping me to keep my sanity apart from the rejections.

I agree with you that this virus has changed the way I look at everything and everybody.  I have always been the one to consider everyone else before myself, and now I find myself thinking I can't expend the energy to help others with their life drama.  I can't be around negative (no pun intended. lol), emotional people, and I have to think about myself and my future for a change.  I, like you, am very relationship oriented, and this is going to be very difficult for me. --- Will

Offline Bartlett

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Re: Disclosure
« Reply #15 on: April 18, 2016, 12:12:39 am »
Will, it is important to remember to care for yourself. I am in the middle of my masters program for counseling and that has been at the forefront of my own thoughts since my Dx in January - finding the balance to care for myself while still wanting to help others through their own drama.

As for the disclosure I am still having issues with that one. I have a couple of friends that I would love to tell just so I have someone besides my wife to talk to, but the culture/world I come from + living in the rural south makes it an impossibility. My dad is aware as is my wife but that is it. I am contemplating telling my mother soon, but am not sure if I want to put her through what will no doubt be a freakout based off of old 80s/90s information.

Hang in there, and take care of yourself. 
DX 1/25/16
3/30/16 - CD4 368 20% VL: 48k
6/7/16 - RX for Genvoya
7/25/16 - VL: <20; CD4 461/17%
11/28/16 - VL: UD; CD4 357/19%
3/20/17 - VL: UD; CD4 489 / 22%
7/24/17 - VL: UD; CD4 449 / 23%
11/21/17 - VL:UD; CD4 523 / 22%
3/27/18 - VL: <20; CD4 580/21%
7/31/18 - VL: 90 ; CD4 552/23%

Offline Will1767

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Re: Disclosure
« Reply #16 on: April 18, 2016, 05:32:31 am »
Thank you Bartlett!  Hang in there yourself.

 


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