Author Topic: living with hiv is a challenge do u think only certain people need to know (Read 6501 times)

miztaken · « **on:** July 01, 2006, 11:57:07 AM »

]i fee my family dont need to know or my children they have enuff on thier plate besides in happy with the way it is im not botherd by stupid questions or ignorance.

jkinatl2 · « **Reply #1 on:** July 01, 2006, 11:59:33 AM »

The only way to overcome ignorance is through education.

By isolating your diagnosis from your family (they are going to find out someday, and might well resent you for your duplicity) you are setting yourself up to face some awfully harsh stuff, all alone.

Oceanbeach · « **Reply #2 on:** July 01, 2006, 05:31:19 PM »

I went to the hospital to visit my mom, right before she died. They (both parents) were pretending it was a routine blood clot problem and nothing to be concerned about. They were simply thinning out the blood so the clot would disapeer.

A nurse walked into that room while I was visiting, the look on her face said death, words were not spoken.

My friend Lisa was on TV with me last month on an AIDS special. She has been living with HIV/AIDS for 10 years and has a 4 year old son. He asked his mother recently what AIDS meant, she is finding a way to educate him so that as he gets older and the disease progresses, he may be able to deal with the problems and issues.

My friend Harold was on the same special. He is a 20 year survivor, his son grew up helping his dad to remember to take his medications, providing support and now his grand daughter does the same. Education is the key to dealing with this disease and if you find a way to openly discuss HIV with your family, there is your best support group. Have the best day
Michael

www.Commission-on-AIDS.org

blondbeauty · « **Reply #3 on:** July 01, 2006, 06:32:01 PM »

I haven´t told my family. They would be worried, my mom would never sleep again...Why tell them if they can´t help me. And I don´t need any help right now.

jupiter · « **Reply #4 on:** July 01, 2006, 06:42:32 PM »

I Cant tell my family either. I know if i did it would be the end of the world. My mom would be in a panic for the rest of her natural life. I personally dont need the stress of all that and neither do they.
Some people can talk to their families about this which is good. In my case tho its just not an option. I have only told a few people whom have been a great support to me. I have specifically limmitted the number of people i have told to keep my privacy. Its allways best to be very careful with the people you tell.

allopathicholistic · « **Reply #5 on:** July 01, 2006, 06:58:30 PM »

Quote from: jupiter on July 01, 2006, 06:42:32 PM

My mom would be in a panic for the rest of her natural life.

I'm sorry to hear that jupiter. It's exactly what I thought too - but I was wrong. I underestimated my mother's life skills and her core strength. I think a small part of her was upset (1) that I would make a prety importatn decision FOR her on my own and (2) that I would underestimate her ability to stay calm and collected and not fall apart. But at the same time she understood why I was so extremely reluctant to disclose. I'm wishing you the best as well as anyone else who chooses not to disclose to family. I know the dilemma first hand. It's a huge one. I wish you the best and only the best {hug} Be good babies, Luv, Alex

cubbybear · « **Reply #6 on:** July 01, 2006, 08:05:34 PM »

Quote from: blondbeauty on July 01, 2006, 06:32:01 PM

I haven´t told my family. They would be worried, my mom would never sleep again...Why tell them if they can´t help me. And I don´t need any help right now.

I totally agree with Juan. Some people don't need to know, especially if you are able to cope with issues on your own, as some of us are and feel more comfortable this way, whilst others need a lot of support and direct care. If you don't feel like telling anyone, you simply don't have to. You need to be able to resource your own support though, be it from online, ASO's or other people if you don't feel you can tell others close to you. But Juan's comment sums up my feelings about telling people also.

Life · « **Reply #7 on:** July 01, 2006, 09:02:12 PM »

I find it weird that someone can feel comfortable not allowing people to share in your life.... To each his/her own...

Teresa · « **Reply #8 on:** July 01, 2006, 09:06:34 PM »

HUbby has not told anyone in his family about his HIV, but he has told 2 people in my family. He has no plans to tell anyone in his family anytime soon. Its his decision on who to tell...i just support him.

Teresa

Jeffreyj · « **Reply #9 on:** July 02, 2006, 12:13:57 AM »

I kept it a secret from my 3 older brothers and My Dad for 15 years. I told them in 1999 after my wife died. My wife and I just told my Mom and that was all. We did not want people to worry, and we did not people to worry about us.
I'm glad we did not tell them all those years. I'm also glad everyone knows now. This is a very personal issue. Like Eric said, to each their own. We all must do what we feel is best. I have found what is best can change with time.
I hope you can be happy with what you decide.

Cliff · « **Reply #10 on:** July 02, 2006, 11:24:47 AM »

There shouldn't be any hard and fast rules here. It's just what works best for each of us. And I would imagine this is a decision where one can change their mind. You may not be able (or ready) to tell your family today, but that doesn't mean that won't change a year, two years or five years from now.

There are pros and cons to telling or not telling someone, which change depending on the person.

- Cliff

david25luvit · « **Reply #11 on:** July 02, 2006, 12:06:47 PM »

Disclosure is a very personal thing...Everybody should make that choice for themselves. Personally, I told my family and it turned out to be a huge mistake. My sister and brother have not spoken to me since they found out four years ago. I think everybody has to decide for themselves whether their friends and love ones can handle the "news". Are they going to be supportive or are they going to be a "negative" force. I chose to live my life out in the open....good or bad....but if I had to do it all over again, I probably would NOT tell my brother and sister.

bear60 · « **Reply #12 on:** July 02, 2006, 12:11:33 PM »

As far as I am concerned if you tell ONE person you might as well tell the whole world. If you tell two people they will talk to a third and so on. If you ask them not to tell anyone....they will anyway. Its just easier to prevent any future fallout by doing the damage all at once and let the chips fall where they may,
THE TRUTH WILL SET YOU FREE

chrisphoenix05 · « **Reply #13 on:** July 02, 2006, 12:16:51 PM »

Hi all,

I've been grappling with this myself. I have told my brother, but since he used to work in healthcare as a phlebotomist, he has a background that permits him some knowledge. I have not, however, told my mother, and my dad died 8 months ago. I only recently got back in contact with my family after 4-1/2 years. Telling my mom at this point is not an option I wish to take. However, I won't say that I'll never tell her. I just want to enjoy our newfound connection before I drop any bombs on her. I mean, it's not even been a year since she lost her husband of 42 years, and she's not completely come to grips with that. I've decided to wait and "maybe tell her later." It keeps it open-ended, no permanent decision yet.

Chris

dario · « **Reply #14 on:** July 02, 2006, 12:26:02 PM »

I did not tell my parents that I am hiv+. My mum would worry so much that it would be another added burden. But it is not because it is this kind of disease ... it might have well been cancer or something else. I know she is not emotionally strong enough to handle it.

You have also to be practical and wise. There might be struggles in the family that may complicate matters.

Alex previously said that one may be surprised to find out how supportive parents would be after all. I agree with him. Those who care for you would surely understand why you might have afraid in telling them and therefore delayed. But caution and not rushing is always adviseable.

tendai · « **Reply #15 on:** July 04, 2006, 08:17:10 AM »

i havent told anyone and i dont intend to until i feel i am ready to handle their reactions. they will see me differently and may feel sorry for me or may think i got what i deserved or someting like that. i'll only tell them when they need to know. so far i'm not sick or anything so i see no need. they may already be suspecting coz there was lot of talk when i got shingles on my face. besides they cant do anything for me even if they did know.

Andy Velez · « **Reply #16 on:** July 04, 2006, 08:58:17 AM »

Miz, there just isn't any flat out perfect answer in the "one size fits all" regarding disclosure. You mention in particular your family including your children.

What are your relationships like with family members? Are you close with them or not? How old are your children? Their ages are important in terms of what and how much to tell them. Those are just some of the factors which I think ought to be considered in deciding if and when to tell whom. If you haven't already read the lesson on disclosure I recommend doing that.

Do you have access to support groups or counseling through an HIV/AIDS service organization in your area? Talking this out with someone and others who understand the situation can be helpful in getting clarity. Disclosing always presents some challenges and sometimes brings disappointing responses. It also can bring you unexpectedly closer to others and almost always I have found that some support shows up that wasn't expected.

Keep us posted on how this goes for you.

Cheers,

aztecan · « **Reply #17 on:** July 04, 2006, 10:02:14 AM »

Disclosure is a very personal thing. There are no hard and fast rules.

I didn't tell my family immediately. In fact, I didn't tell anyone for years - didn't even admit it to myself.

Now, they all know. I have found being honest to be very freeing. But I waited until the time was right for me.

HUGS,

Mark

allopathicholistic · « **Reply #18 on:** July 04, 2006, 10:19:16 AM »

Quote from: aztecan on July 04, 2006, 10:02:14 AM

Disclosure is a very personal thing. There are no hard and fast rules.

I didn't tell my family immediately. In fact, I didn't tell anyone for years - didn't even admit it to myself.

Now, they all know. I have found being honest to be very freeing. But I waited until the time was right for me.

Perfectly said. For each person coping with HIV, the time for disclosure has to feel "right" and unmistakable (deep down in your gut) ... That time might be decades away or even "never" ... .

I hope I didn't come off as trying to push people toward disclosure;I was merely sharing my own story

penguin · « **Reply #19 on:** July 04, 2006, 10:31:52 AM »

As others have already said, it's an entirely personal choice, and there (generally) isn't any rush...so as and when you feel ready. For me, when i want to talk to someone about a difficult issue, i spend some time thinking about whether i'm strong enough at that time to deal with the possibility of them not reacting in the way i want/need them to...if the answer is no, then i seriously consider waiting until i'm in a better, stronger place.

I think we often underestimate the strength and resilience of the people we care about though...shock, panic, sadness...these things all lessen with time. The world rarely ends. Sometimes I need to allow others to take responsibility for their own reactions and their ability to cope with things...rather than making that decision for them.

Kate

carousel · « **Reply #20 on:** July 04, 2006, 10:56:28 AM »

bear60 · « **Reply #21 on:** July 04, 2006, 10:58:57 AM »

Tendai: quote " besides they cant do anything for me even if they did know"
Are you saying they cant make you "all better" ? Thats true, they cannot change the fact that you are HIV positive. But there is a much talked about aspect to disclosure: YOU are unloading yourself of the burden that "keeping the secret" puts on you. It reduces your stress levels and allows you to put energy into your own health issues.
And who knows....a little "help from my friends" never hurt.

terpie82 · « **Reply #22 on:** July 04, 2006, 12:08:54 PM »

Quote from: Andy Velez on July 04, 2006, 08:58:17 AM

Miz, there just isn't any flat out perfect answer in the "one size fits all" regarding disclosure.

I definitely agree with Andy. I told all my best friends, my boss, co-workers and most importantly my sister. When I told my friends, they promised to keep this confidential, and when I held an emergency lab meeting to talk to my lab members, they automatically said, "OK, we have to keep this within the lab". As for my sister, she slipped up once and told a close friend of hers, but she didn't know better and I reprimanded her for that and has not done it again. Basically everyone except my parents know because if I told them, their reaction will impact their own lives, my life and the lives of others around them. My mom for instance is over-bearing and very over-protective of her only two kids, and knowing her, if she were to find out that I was positive, she would make me drop out of school and take care of me 24/7 like I was on my last days. I don't want that and I definitely don't want that for her. To each his/her own and to thine ownself be true.

miztaken · « **Reply #23 on:** July 04, 2006, 01:01:28 PM »

Quote from: terpie82 on July 04, 2006, 12:08:54 PM

I definitely agree with Andy. I told all my best friends, my boss, co-workers and most importantly my sister. When I told my friends, they promised to keep this confidential, and when I held an emergency lab meeting to talk to my lab members, they automatically said, "OK, we have to keep this within the lab". As for my sister, she slipped up once and told a close friend of hers, but she didn't know better and I reprimanded her for that and has not done it again. Basically everyone except my parents know because if I told them, their reaction will impact their own lives, my life and the lives of others around them. My mom for instance is over-bearing and very over-protective of her only two kids, and knowing her, if she were to find out that I was positive, she would make me drop out of school and take care of me 24/7 like I was on my last days. I don't want that and I definitely don't want that for her. To each his/her own and to thine ownself be true.

http://thanks for your input it is givving me alot of choices

jerry · « **Reply #24 on:** July 04, 2006, 01:07:01 PM »

That is totally up to you on that one. I told my parents so they know about it now. The hard part was to tell them I was living a gay lifestyle, they still don't want to believe that.

To each his own.

killfoile · « **Reply #25 on:** July 04, 2006, 01:28:03 PM »

I just wanted to share a few thoughts as a parent, regarding this subject.

For me, there is very little that my daughter could tell me that would affect my love for her. Actually, I would be very hurt if she had something serious and chose not to tell me, but that's just our relationship. I became poz when she was 3, so she has grown up with a poz dad. Never phased her a bit. Even when we went to Canada's Wonderland (amusement park) and I had an IV port in my hand, nothing. When we had to find the First Aid building, so I could use a pole for my infusion, she never batted an eye.

She's often been my rock, but I've also been sensitive on what I share with her. I might share that I am not feeling well, but no specifics because they just might needlessly worry her. But to think that she could have something so serious in her life and not share it, I just don't see it happening.

And no matter what you might think, your parents have more resiliency than you might believe. The majority of them will survive, get over it and often they can become your closest supporters.

I'm not telling you what to do, just suggesting that you really consider including your family. When you omit family and friends, in a way you are insulting them, by your deciding what they can handle. Sorry, that's not your call. Put yourself in your family's place. How would you feel if a family member kept some very serious secret?

Again, it's always your call as to what you do, but I'd like to think that most parents, after the initial shock, would rally around any child with such an illness. Please don't underestimate how powerful their love is for you. There may be things you do, that they do not like, but it rarely diminishes their love for you.

I'd be hurt beyond words if my daughter did that to me and I suspect most of your parents will feel the same. Please consider giving your folks the opportunity to live up to your expectations. Many times, they will not only provide the support you need, but they will exceed your expectations. You'll never know if you don't give them a chance.

kcmetroman · « **Reply #26 on:** July 04, 2006, 03:08:07 PM »

My story is a bit different. My mother, and pretty much my whole family found out at the same time. When I was in my deathbed, I woke up and saw my mother sitting quietly in the corner with a mask on. I cried. There is no question that she saved my life, and also no question that she has been the pillar in my recovery.

I reminisce and realize it was probably for the better. I had no reservations, no chance to run from it. By the time I had left the hospital pretty much everyone I loved was apprised. While I would never recommend that form of disclosure, it has made me free from the personal persecution that many of you put yourselves through. I have no qualms about telling anybody. The people I care about already know, and support me.

tendai · « **Reply #27 on:** July 05, 2006, 09:34:10 AM »

Quote from: bear60 on July 04, 2006, 10:58:57 AM

Tendai: quote " besides they cant do anything for me even if they did know"
Are you saying they cant make you "all better" ? Thats true, they cannot change the fact that you are HIV positive. But there is a much talked about aspect to disclosure: YOU are unloading yourself of the burden that "keeping the secret" puts on you. It reduces your stress levels and allows you to put energy into your own health issues.
And who knows....a little "help from my friends" never hurt.

bear
the thing is i dont want to burden them with this thing. i am carrying it fine by myself right now. i am not comfortable telling them now coz i dont need any financial assistance from them or looking after as i am asymtomatic and it may just worry them. mostof all i dont want to hear their opinions on why or how i got it and all and how much i deserve it or their pity. my best friend who i might have told is now a bit of religious fanatic and will only preach on the consequences of fornication.

wellington · « **Reply #28 on:** July 05, 2006, 04:13:39 PM »

Sharing information isn't always about whether or not you can/cannot deal with events. Sometimes, it's a wonderful opportunity to trust someone and make them feel important in your life. It's not always about you! I know it's not always possible - circumstances and skill differ widely. I recognize that disclosure can come with risks. But, is a stagnant life worth living?

How goes the old adage? Nothing ventured; nothing gained.

doctore · « **Reply #29 on:** July 08, 2006, 12:44:05 PM »

Personally, I find it easier to not have to hide things from family. I also find that having the support of friends and family is one reason I am on my 20th year of being poz and 15th year with AIDS. However, I have been hospitalized 3 times and have bouts with things I feel would cause more stress on me by not disclosing. Also, I have found that my personal disclosure has been one of the most powerful things I have done to educate others.

That being said, disclosure is very personal decision and should be based on the person and their relationship with their family. Also, if I was HIV positive and doing well on meds, Im not sure if it would be necessary to disclose. I wonder how many people who are diabetic, tell everyone that they are diabetic etc. I dont think there are any universal answers. We all have to find our own way and maybe by sharing the pros and cons we can enlighten each other to new possibilities.

Alain · « **Reply #30 on:** July 08, 2006, 02:44:31 PM »

krakerjm · « **Reply #31 on:** July 08, 2006, 03:23:49 PM »

Early on I decided to tell everyone near and dear to me, family first, friends second and close co-workers next. Didn't make much difference to those who really cared, the others I soon learned I didn't need in my life. As Andy said, it different for everyone. We as individuals have to feel comfortable with disclosure; I have always been one to be open an honest and let the chips fall where they may; doesn't work for everyone in every situation. I hate deceit and drama in my life, so I just go for it...

krakerjm · « **Reply #32 on:** July 08, 2006, 03:33:40 PM »

P.S. Family members accepted it very well but cautioned who I told; seems they had more fears of reprisal than I. Course I've always been that way: love me or leave me, I don't allow myself to fall by the wayside: U fall, and I'll help U up if U let me, if not I move on without U.

Tar Heel · « **Reply #33 on:** July 08, 2006, 09:17:34 PM »

family knows
close friends know
co-workers know

casual acquaintences don't know

It should vary from person to person with their individual situation. But for me, being open and upfront is worth all the money in the world!

Matty the Damned · « **Reply #34 on:** July 08, 2006, 11:56:40 PM »

I don't hide my status from anyone. I don't shove it in people's faces, I just reveal it as it seems appropriate. If people know and are going to treat me badly because of it, well there's not much I can do to stop them. Generally I get treated very well. Australians can be cool like that.

In 2004 I famously revealed my HIV status at a political conference in the course of an important debate on HIV/AIDS and government funding for harm minimisation programmes. I felt it was necessary to do so, because someone with HIV can speak powerfully on these issues and challenge complacency in a way that neggies cannot. Similarly I think it's important for the wider community to see that people with AIDS are active and contributing members of society.

That said I respect the rights of my HIVer brothers and sisters to disclose in whatever manner that they feel is appropriate for them. What works for me may not work for others. Just as I have a right to disclose others have a right to their privacy.

MtD

zephyr · « **Reply #35 on:** July 09, 2006, 01:16:28 AM »

Hi Miz...

Welcome to our Forums, by the way!

I'd like to chime in if I may and tell you that I held my positive status very, very private for was 13 years. The only individuals who knew were my family, and I told them all immediately. They have been very supportive, but never asked me any questions. I kind of took that as their way of knowing that I was ok, that I would let them know if any complications arose.

It has only been recently that I have realized that I needed to cease living with the 'silence', that my having HIV does not define who I am. I have always striven for integrity, honesty and being true to myself, and understood, finally, through my involvement here on AM that I did have the strength to disclose.

Having met other women here on our Forums, Trish, Ann, Jan (annibec), Lisa, and then reading Regan Hoffman's interview in the April issue of POZ magazine revealed myself to me, and now, soon, the rest will be history.

I wish you all good things, and inner peace, as you contemplate this question. You are not alone in your fears, or in your questions.

All my best,

Zephyr

bobik · « **Reply #36 on:** July 09, 2006, 08:44:25 AM »

Quote from: tendai on July 04, 2006, 08:17:10 AM

i havent told anyone and i dont intend to until i feel i am ready to handle their reactions.

Hey Tendai, I think that is a very honest reply!

Coen

miztaken · « **Reply #37 on:** July 15, 2006, 05:17:29 PM »

thx for your support and upmost honesty
i love you as if you wer my own family in spite of xxooxoxoxooooxxx

manchesteruk · « **Reply #38 on:** July 15, 2006, 06:43:39 PM »

This completely comes down to the persons circumstances no one has the same relationships with their friends and family. In my personal case I found I couldnt keep it a secret from my family because I realised i'd started to withdraw myself from them because I almost couldnt face them knowing I was keeping this really big secret. Telling my friends came reasonably easy and i'd done that within the first few months. I found everytime I disclosed to someone I felt like I was taking control of my life again it was empowering. Don't get me wrong I wasnt doing this wrecklessly i've only ever told people I thought I could trust and who wouldnt react in a bad way.

My family was a different story I told myself I was going to keep it from them to protect them. My view of this changed especially after speaking to some of the women with children on this website it was interesting hearing it from the parents point of view. When I did tell them it was probably one of if not the hardest thing i've ever done in my life I was terrified by how their reaction might be. As it happened they were brilliant and if anything i've become a lot closer to my parents since. Taking a quote from earlier in this thread in my experience the truth does set you free.

alisenjafi · « **Reply #39 on:** July 16, 2006, 09:40:41 AM »

I agree with many here. Until you are comfortable with the situation I don't think you need to tell the world.
Hers is a good example of what can happen:
http://forums.pox.com/index.php?topic=1706.0

Each person has to make their own decision, but to me just like what I like in the bedroom, not every friend needs to know, but that is me. Again I think it would be careless to just say go out and tell the world in the name of educating others.
Cheers
Johnny

jkinatl2 · « **Reply #40 on:** July 16, 2006, 10:00:55 AM »

Allsenjafl, linking to the situation you did was in the worst possible taste.

miztaken · « **Reply #41 on:** July 16, 2006, 01:09:59 PM »

Quote from: jkinatl2 on July 16, 2006, 10:00:55 AM

Allsenjafl, linking to the situation you did was in the worst possible taste.

i totaly agree

livingpositively · « **Reply #42 on:** July 16, 2006, 03:22:44 PM »

I know for me disclosing to my mom is a matter of respect. Do I NEED her right now from an HIV support standpoint - probably not. I have support from other avenues that are, to be quite honest, more effective than she will be anyway. Is she going to "lose it" - probably so. She's a mom and I'm her only child. BUT, if I don't tell her myself I feel a lot of "consequences" potentially could come from that. A) I get sick (god forbid) and incapacitated and she finds out that I am sick, I'm sick because I have HIV/AIDS and she learns this from someone other than me. I think that would be horrible for her to find out that way. B) If I don't tell her, I display that I have no confidence in her ability to be an adult and make "grown up", informed choices. Will she turn away from me? I doubt it. Is it going to SUCK to tell her - ABSOLUTELY!!! She is going to think that I'm going to die in a year. I guarantee that the only images that my mom has in her mind of HIV/AIDS are those from the "bad days". She knows no more about it today than she did in 1990. As a matter of fact, when I came out to her that I was gay, that was one of the first questions she asked, "What about AIDS"?

For me this is like a 2nd coming out process. It took me 25 years to be truthful to myself and others about being gay, and it was miserable. I resolved within myself that that is who I am, it doesn't make me a different person from what anybody knew before and if they couldn't or chose no to accept me because of it, then I probably didn't/don't need them in my life anyway. Now, I feel the same way about HIV. I am just thankful that I decided that I refuse to hide in another closet for 25 years again.

That said, there are family members that I will not disclose to, namely my grandparents. We are extrememly close, but they are both nearly 90 years old. From an HIV standpoint, I certainly expect to outlive them - healthy and all - so there is no need to tell them. Maybe that's a little hypocritical based on what I said above, but that's the decision I have made. Other family members - in due time. I also believe (and this is just my personal conviction) that disclosure should be done in person. So when the time is right and I am face to face with them, I will disclose.

I personally feel that a lot of people that choose not to disclose "becasue they can't help" or "there is nothing they can do" or whatever other reason(s) it might be, do so on some level of shame. I refuse to hide, again, in a closet of shame and oppression. Been there, done that and I don't want the t-shirt. If they don't like me because I'm gay or because I have HIV, so be it. Clearly they are not the friend or family that I thought they were and I don't need that duplicity and deceit in my life anyway. Their loss, not mine. I'll be better off for them "leaving" in the long run.

In any case, it's all about personal choices. Just as coming out as G, L, B, or T - or any other "coming out" that one may experience. One must do what you feel is right for your situation.

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living with hiv is a challenge do you think you should let certain people know?

Author Topic: living with hiv is a challenge do u think only certain people need to know (Read 6501 times)

tendai

jerry

tendai