POZ Community Forums
Main Forums => Someone I Care About Has HIV => Topic started by: JamieD on July 29, 2007, 10:02:58 pm
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Well.... this is the "Somebody I care about has HIV" forum, so I thought this would be a good place for this.
As people who are on the outside of the who thing, looking in, I was wondering if you could give me some opinions.
No one at all that I am close to, except my ex-bf and best friend, know that I am HIV+. I have kept it a secret from everyone, and I plan to keep it that way for a long time. I have been really depressed for a long time though, and I lied to my family about what disease I have. I told them I had some other deadly disease so that they would understand why I was so depressed, yet not actually know what's going on. I would have preferred to not to have said anything at all, but it is so obvious to everyone around me that something is different with me that I had to say SOMETHING.
I wonder if I ever will tell them, but I am afraid they will be mad at me for lying to them. If someone you really cared about lied to you about having a disease, and then later came forward with the disease they actually had do you think you would be angry with them?
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Hey Jamie,
The whole reason I came to this site was because a very new friend of mine (who I have been sleeping with) just found out he was positive. Though I have worked in medicine my whole life, I did not know the details of HIV, just the basics. When he told me, I went straight to the internet so I could know as much as I could learn about the disease, just so I could be there for him....so we could talk about anything he wanted to, whether it be the technical lab and med stuff, or, more importantly, so I would know what Not to say, or how Not to say it. This Wonderful Web Site Has Been A God Send, If I knew the process, I would nominate it for a Nobel Peace Prize.
If it is some one that truly cares about you, or is interested in you, the diagnosis of HIV is going to hit them very hard. Or it has me at least. The first time I saw my friend after he had told me, I just grabbed him and nearly squeezed him to death, and would not let go. I have cried a great deal over this for him. I guess I am trying to say that the people that care about you, feel pain for you. I always tell the bois who are just coming out of the gay closet, that just like coming out of the closet was a 'process' for them, it is also a 'process' for those who care about you that you choose to tell.....Dealing with a new diagnosis of HIV in a friend is so new to me, this is the closest correllation I can make at present.
Now as for your question, I am a very open minded and forgiving person. If I am someone you are/have slept with, then you need to tell me the truth. Not telling me the truth is You taking away My Right to make informed decisions, so you must tell partners the truth. As for all others,,,,,we all know that there is a huge socail stigma* attached to HIV. To pretend it is not there would be lying to ourselves. It's no one's business what your particular medical complaints are, it's just that some are harder to keep private than others. So, if prying minds must have an explanation, then, until you feel comfortable telling them, I don't see anything wrong with that. Wouldn't it be nice if you could just simply say, I have a medical complaint that requires a great deal of vigilance on my part (or etc.) but I am doing quite well thank you. You will of course have the "holier than thou martyrs" that will persecute you for "not telling the truth",,,,but in essence, these are probably the same people that prevented you from telling them the truth in the first place,,,,their inability to critically talk about others.
**There is such a stigma, that at the hospital where I work, it is a fireable offense if you access any information whatsoever on a patient that has an STD.
Anyway, I am assuming that getting the diagnosis of HIV, involves you going through a whole process of acceptance and coping, and everyone will handle it in the same way, as well as those you tell about it that care for you. If at some point you decide to tell them that it is actually HIV, just tell them, "I was having a hard time dealing with myself, and was not prepared to help you deal with it as well". I think that is a perfectly admirable response, and if they can't understand that, then maybe they do not care as much as they should.
Hope this helps some.
Jason :-*
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I would nominate it for a Nobel Peace Prize.
You might rethink that when you see us really get into it. ;)
MtD
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Naw, I have spent every spare minute of the past several days, reading every entry on this site. It has done worlds of good for me, both in calming my angst about our sexual activities, and for giving me more optimism about what he is entering into. I could say it a hundred times and still need to say it again, this site has made a big difference. Incalculable. Enormous. I really am trying to do the very best I can, and I have decided that this place is the best one for learning what I need to know. If it were not for what I read on here, I would not have even slept with him today when he came to me (which would have been a great shame, cause he is fucking great in bed, lol). To quote from Sordid Lives, "I feel like I've been to church!"
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If someone you really cared about lied to you about having a disease, and then later came forward with the disease they actually had do you think you would be angry with them?
No, I would not be angry with them. I would be concerned about their well-being.
After a bit, I might wonder about the mis-direction, but given HIV's stigma I wouldn't attach any importance to it. My main concern would be helping someone I love face a life-threatening problem. Love comes first.
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I lied to my family about what disease I have. I told them I had some other deadly disease so that they would understand why I was so depressed, yet not actually know what's going on.
So your family now thinks you're going to die soon. Now you shared your depression to the entire family.
The chances that you die of AIDS are very slim. That it's in your mind every minute is understandable, that you make it even more difficult for your family is not. I urge you to talk to a professional on how to handle this, because you're not managing it well now.
Milker.
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jamieD,
no, if it were me, i wouldn't be mad at you. i would be concerned for you. but maybe that's not what you need/want right now...for someone to be overly concerned about you.
anyway, since i'm probably a little older than you, i can tell you that you will find that the truth shall set you free everytime. telling an important truth is a lot like like taking a plunge, jumping off an airplane, taking a leap of faith. but it's worth it i think, in the long run.
but, i would understand why you lied.
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So your family now thinks you're going to die soon. Now you shared your depression to the entire family.
The chances that you die of AIDS are very slim. That it's in your mind every minute is understandable, that you make it even more difficult for your family is not. I urge you to talk to a professional on how to handle this, because you're not managing it well now.
Milker.
My family doesn't think I am dying soon. I told them I had a few years to live. I may have been being a little dramatic when I told them, but I don't feel like I have very long to live and quite frankly I don't want to.
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I could never be angry at someone for doing that.....if I cared about that person, I would try to support them as much as I can. Feelings are such a powerful thing and being able to get them out, whether it's by talking, writing, whatever........you need to allow yourself the time and patience to get it out.
All the best to you!
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Jamie, what sort of therapy and/or "real life" group support are your receiving right now? I've seen no medical indication other than a low cd4 count that you have recounted and with proper medical care that is not a reason to believe you're not going to live very long.
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My family doesn't think I am dying soon. I told them I had a few years to live. I may have been being a little dramatic when I told them, but I don't feel like I have very long to live and quite frankly I don't want to.
Dearest JamieD,
You are going through the same phase my son went through and sometimes "revisits' and gets through again, the saddness and being frightened and feeling alone. YOU are not alone. Here I am a stranger reaching out to you...live for today and the next and the next...
Listen to the people in this site..it is NOT a death sentence.. you will be able to live..You are depressed , I wish I could give you a hug..it would not matter to someone who cares about you if you lied. People lie and people need to forgive. You are scared and do not want to be rejected.
Like the others said, it will be a shock to those you tell as we too look at the disease as a death sentence until we calm down and educate ourselves..there are medications to help now and there is this wonderful site to help you too with a lot of educated, knowledgeable and caring people. And the best place to get yourself together is when you ask people who have been through and are still living through a situation. It is very sad that if you had cancer you could tell people and there would be no problems.
If you are religious, then pray, If you are not religious then have faith in yourself and in these people here..They are very helpful and supportive. Do not give up, you will know when and who to tell. IF you tell , you can move on and care for yourself. You are a valuable special person , it is just a disease, you are not a disease. Society is screwed up.
Hugs to you.
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Some of you know that I found out about my mates status because of an uneducated bouncer in a London club.
My first thought was "how can I help my mate?". The fact he hadn't told me didn't even cross my mind.
I know you're case is slightly different because you have told your family one thing and the reality is another, but those that care at you will worry about you first and the situation second.
Beyond that I can't give you advise. Just don't underestimate people and the support they're willing to give.
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Jamie, what sort of therapy and/or "real life" group support are your receiving right now? I've seen no medical indication other than a low cd4 count that you have recounted and with proper medical care that is not a reason to believe you're not going to live very long.
Philly-
I am recieving, both prior to and currently, cognitive behaviour therapy, once to twice weekly. I am also taking an MAO-I inhibitor which is modestly effective at relieving my depressive symptoms and has little to no side effects.
I don't want to get into my normal hum drum mood in a thread that's not in "Mental Health Issues", but I will just say that I already feel like life is over and I have nothing to live for. I mourn everyday for the life I had before I found out I was HIV+. It wasn't perfect, as a matter of fact it was terrible, but atleast I had something to dream for. All hope is lost.
I should say, I am a nursing student. I have done clinical rotations in a few different floors, but mostly the geriatric. In my own experience those people who believed they were on their way out and believed that there was nothing left to live for tended to actually get their "wish". Not always, but people who felt that way tended to die a lot faster then those who didn't.
I can't explain it enough. I feel like I have nothing to live for. I feel like an empty shell who just pulls himself out of bed in the morning, and goes to work. I care about almost nothing. [Almost] Nothing matters anymore.
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Thank you all for your encouragement. :) It really helps. I don't think I ever will tell my family, but it's good to know that "normal" people who care for someone wouldn't be angry with me for lying about what was wrong.
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Jamie, since I last wrote this, my friend has completed his first week of being diagnosed with HIV. He has completely shut down. Has been days since he would answer a phone call, IM, or email. It has been very hurtfull that he will no longer communicate with me. I told him from the begining, that I had no intentions of anything about our friendship changing, and that I would always be there for him. It has really hurt me that he is acting this way. I hope that soon he will 'get back in the game'. I know that this situation is about him and his needs, not mine, so I have resisted the temptation to constantly hound him and 'keep him social'. If someone cares about you, truly cares about you, they will not care that you lied. The first few times, I cried for my friend and with my friend,,,,,now I find myself crying over my friend. Every day I hope he has not given up. I guess the point of this is, just because things have changed for you in the way of your health, nothing has really changed with the relationship for those you are close too. Continue to treat them the same as you were before, or at least, thats what I wish me and my friend could do, have it like it was a week ago at this time, with or without the HIV.
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Jamie, since I last wrote this, my friend has completed his first week of being diagnosed with HIV. He has completely shut down. Has been days since he would answer a phone call, IM, or email. It has been very hurtfull that he will no longer communicate with me. I told him from the begining, that I had no intentions of anything about our friendship changing, and that I would always be there for him. It has really hurt me that he is acting this way. I hope that soon he will 'get back in the game'. I know that this situation is about him and his needs, not mine, so I have resisted the temptation to constantly hound him and 'keep him social'. If someone cares about you, truly cares about you, they will not care that you lied. The first few times, I cried for my friend and with my friend,,,,,now I find myself crying over my friend. Every day I hope he has not given up. I guess the point of this is, just because things have changed for you in the way of your health, nothing has really changed with the relationship for those you are close too. Continue to treat them the same as you were before, or at least, thats what I wish me and my friend could do, have it like it was a week ago at this time, with or without the HIV.
It's been ONE week...of course he's not gonna be "back in the game"....and believe me, he's not acting this way to hurt you...just give him a little space for now. Once the shock wears off a bit I'm sure he'll seek you out. Having a friend that "knows" is a great thing for an HIV+ person.
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It has really hurt me that he is acting this way. I hope that soon he will 'get back in the game'. I know that this situation is about him and his needs, not mine, so I have resisted the temptation to constantly hound him and 'keep him social'.
Don't hound him, but but make little gestures that show you're thinking about him, and you ain't going away. Maybe this week send him a cute, funny "thinking of you" card. Next week send him a batch of home made cookies (or really good bakery ones if you're unskilled in the kitchen). Some kind of contact once a week till he "comes around."
He's in shock, scared, and has withdrawn from the world to process it all. Pretty common reactions to any serious diagnosis.
Is he communicating with anyone? The though crosses my mind that you need to make sure he's not in the suicidal mindset. But if he won't answer any attempts to contact him, I not sure how you'd do that. Maybe the medical clinic/HIV clinic/STD clinic where he was diagnosed, or local AIDS service organization (if he's contacted them), has a social worker that you could ask to give him a call/visit claiming the "check in" is just standard operating procedure with new patients.
Just keep making small, friendly, but not pestering efforts. Be sure you never show him that you're frustrated by his lack of response. Just let him know you'll be there whenever he comes up for air.
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Racing and LT,
Thanks for your responses. I know that he is just going through the cycle of grief, and not every one progresses at the same speed. Perhaps saying 'back in the game' was not the right terminology to use, as I def dont expect that. Anyway, I always make jestures whenever we talk or see each other. Because he has just moved here about 3 months ago, and, by his on admission, does not know anyone but me (which is about 3 weeks), I suppose I feel a little more responsible and obliged than I would otherwise~?~ Anyway, after he got back in touch with me, I asked him to please call/text/email me everyday until he got a good grip on this, so I would know that he had not commited suicide, or gone insane, or was on some drugged up drunken binge (not that he drinks or uses drugs). And he has communicated with me every day since, which is a comfort to me. We seem to be moving along now in the cycle, got to see the angry part of the cycle a couple of days ago ~whew! Hope that is over with! I dont know where he is at on the clinic and seeing doctor part. I am assuming that he has that worked out, as when we talk, I dont ask him about the specifics. I let him tell me what he wants me to know and leave it at that. As I said, it's about him, not about me. I have let him know, that I am not trying to pry into his personal business. I also do not stalk him. I make 2 attempts a day to contact him, and if he does not respond, I leave it at that.
Anyway, thanks for your responses.
I will quit rambling now, lol
Jamie, hope I have not highjacked your thread, lol.
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My son lives in a very small town (30,000) and it didn't take long for word to get around.
I cannot imagine my son surviving the stigma of this disease without the support of his family. Within the first few days of diagnosis, pretty much everyone in my family...and a very large one at that...had called me. They didnt call with fear in the voices...but love and compassion in their hearts. My family has been unbelievable...and with the exception of my brother and sister in law...they have shown exceptional love and support for Christian. I don't think that I could have made it either those first few weeks, without my family being there for me.
I found out that my son had HIV before he did. He was in the recovery room after having his lymph nodes biopsied. The surgeon came out and told us that my son was in "the last stages of AIDS"...which was a total uneducated diagnosis, on the surgeon's part. He had absolutely nothing to base that on. After being seen by an ID doctor and having labs done...my son's VL was 81,000 and Cd4 was 368...my son was NOT in the last stages of AIDS.
My love and support for my son was so strong at that point...with that idiot doctor standing there...that i asked him to please allow ME to tell him that he was positive for HIV. I could not imagine some stranger standing beside his bed giving him that news...and remember...he told us he was in the last stages of AIDS.
If the situation were different...would I be upset that my son had not told me? hhhuuummm...I think that i would be hurt that my son did not trust my unconditional love and that he did not allow me to hold him...to comfort him...to wipe away his tears when he was scared and confused. I think that I would be hurt that he did not allow me to continue the job that I started 29 years ago when I gave birth to him.
I know that all situations are different...and this is only "my opinion" and how "I would have felt"...but I would have not been mad...just disappointed that my son did not trust my love...and that would have truly hurt my heart. If I were you...i would be honest with your family. Please trust their love.
hugs,
kim
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I wonder if I ever will tell them, but I am afraid they will be mad at me for lying to them. If someone you really cared about lied to you about having a disease, and then later came forward with the disease they actually had do you think you would be angry with them?
Not if he made me understand the reason he lied was because of fear of rejection. (We are all aware of the general populous stigma assigned to particular diseases. That would include the folks you lied to, as well.) Your words suggest that you have people who really love, care, and support you.
So furthermore, I would appreciate it if he didn't wait for a very, very long time before he told the truth.
Not conveying this to insult, Jamie, but I have found in my years of living that it's better to be honest if you are going to have something come out of your mouth. Lies (little ones & big ones) require so much followup maintenance.
When I first disclosed to my family members I asked them not to inform the others in the family. I wanted to talk to each one myself. As as I told each member, I would inform the others of my disclosure progress. I asked them not to disclose outside the family unit. For years, no one knew but those five family members.
A couple of years ago, one of my cousins was told, inadvertently. Now, everyone he talks to knows. Yes, he's a gossiper. Always has been. It's not a problem for me as I don't live in the vicinity.
;)
Mike
Oops! I see your question is posed to non-HIV+ people. Sorry I didn't retain that specific..........but will leave my post instead of withdrawing it.
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If the situation were different...would I be upset that my son had not told me? hhhuuummm...I think that i would be hurt that my son did not trust my unconditional love and that he did not allow me to hold him...to comfort him...to wipe away his tears when he was scared and confused. I think that I would be hurt that he did not allow me to continue the job that I started 29 years ago when I gave birth to him.
I think this is the most beautiful thing I have ever read on this board. Thank you, Kim, for sharing.
I think most of us want to protect our families from this thing we are going through - to not be looked at differently by them. It has EVERYTHING to do with the stigma of this disease.
If I had cancer, I wouldn't think twice about telling my family and friends. HIV made me pause and I hate this fucking disease for that!!!
Pete
(who is sorry for the hijack but just feeling a bit emotional)
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@kim
you are the best mum in the world.when i was diagnosed HIV positive,i told those in my family i thought should know and keep it a secret not because i don't love the others but because i though they could not handle the news. when everyone knew my mum inclusive i had tell her the truth not like i dint want her to know just that i dint want to hurt her.i think it is important for family members to know, with their love and support you'll get through it.
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The first person I told was my brother. He since then would not let me go to any ID doctors without him and he insists that I tell him about any progress in my medical problems. When I didn't tell him that I needed to go on proton pump nhibitors for my stomach due to initial stress he was really upset...
The first problem we faced was to tell my parents. Since they were divorced it had to be a both or none approach. We decided to tell both. My brother went to both parents with me. Which was really great since the one parent now lives in a different counrty and my brother had to concure his fear of flying to go with me (buy dit he have a few beers and held my hand on the plane)...
Subsequently my family all told me individually that they would have it no other way than having been told. They would have been hurt.
They now call themselves the firm: they all have shares in me.
In the end it is love that remains the strongest.
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If my daughter were to do what you are doing, my reaction would be exactly like Kims. Jamie, you are missing the point about parents and our love for our children. You may do something that may disappoint your folks, but they will never stop loving you, because you are their son. The true love of a parent is unconditional and while I may not like something that Kate may do and there are even times when I just do not like her, i could never stop loving her. I believe that what most parents want is that their children feel comfortable coming to them with the important issues in their life, knowing that no matter what the subject, in the end, the unconditional love will always trump all.
Please do not underestimate your folks and their capacity for empathy and support. When you tell them the truth, they will accept it and probably even understand it, even though it will also hurt them that you lied. But rather than living this lie, why not take this opportunity to be truthful with them so you can get the true support you need and they can provide that love they so want to give to you. You are very fortunate to have such loving parents. I would hope that you would respect them enough to tell them the truth, trust me, they probably already know... they are just waiting until you are ready to tell them. Take that next step my friend, you will never regret it.