POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: jm1953 on June 30, 2012, 09:07:44 pm
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I posted the thread about survivor's guilt, and I can truly say I miss my friends so bad that have passed. I now completely understand how isolated they felt when friends and family slowly kept coming by as they got sicker and sicker. Not in all cases but in many. I'm experiencing the same thing and I have read others are as well, so I guess we are still living with the stigma of many people responding negatively to our now showing signs of our illness. Lipodystrophy, Lipoatrophy, Kidney and Heart problems, multiple skin issues, bone problems, major fatigue you name it, we all have some or all. Tired of people saying "you look like you're loosing weight, or look really sick." Even though I'm trying to disguise the illness by Sculptra treatments, testosterone and steroid injections, and clothes which disguise the problem. Or having no energy to do anything so friends get pissed at you.
Right now my family does not talk with me, and many friends have fallen by the wayside both healthy and with HIV. Guess they don't like looking in the mirror of what they may look like. Not feeling sorry for myself, but disappointed, and learning through therapy it is not my problem but theirs. Definitely as Sir Elton John so often fights for, their is still a huge stigma attached to AIDS.
In contrast, I regularly go to hematology appointments for a blood disease I have in a cancer institute. There I feel completely at home with people who are surrounded with support, love. It is so empowering to be around folks who are so brave, positive, and able to show their illness and not be ashamed. Most are on chemo or radiation and have lost all their hair, lot's of weight. Some wear bandanas, barets, or just display their hairless head with pride. My heart goes out to all of them. They are so open to tell their stories, but I rarely tell them I have AIDS. Just a blood disorder.
Just feel like friends don't want to be around me, not that I'm a whiner, but just sick. The one's with HIV are the biggest disappointment. Not judging, but I can't help but feel like I'm dirty in some way. Thinking people feel we deserve having this illness because of our questionable sexual actions. I don't wish cancer on anyone, but I truly wish we had the family spirit and support those patients do, and are not necessarily scorned or shunned by family and friends. I almost wish I had cancer not AIDS just because of the stigma attached.
This all may sound rather strange, but I just remember my dying sick friends telling me how hurt and disappointed they were in friends and sometimes family ditching them in their hour of need. For some reason, even before I was positive, I stuck with my friends till the bitter end and I'm so glad I did. Thus comes in some of the survivor's guilt.
A complex subject. But just wondered if other long termers are finding people pulling away because of your appearance, lack of energy or ability to do things like you did? Frankly I feel pretty abandoned, with the exception of a handful of friends who are solid. And of course you all. Thank God for this forum.
Just wanted to get this out. I has been bugging me alot and I'm trying not to feel guilty about being sick. Stupid huh?
Thanks for reading, comments always welcome,
Best to you,
Jeff
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Hey Jim.....WOW :-[
Yes, I feel like this too, the older & more sicker I get, the more people become very dismissive, and YES it's kinda sad when your own peers ( other Pozzies treat you like this) so , I can relate to what your saying here, and I would like to thank you for sharing all of this.....
I'm kinda lucky tho, as i have someone to share my life with that's also sicker than me (None AIDS)......sometimes I just don't feel like I actually fit-in w/ a lotta of my Poz+ Peers, and let's not even speak about other gay-men that's even worse for me and my otherhalf too........sometimes I feel like I'm knocking on the door, but I just can't get in..........way anyway that my RANT.......lol
Again Jim thanks for sharing, this is very powerful stuff, that nobody wants to speak of ;)
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Ive noticed this too although now I am somewhat healthy, I had meningitis in 05 which completely fuc*8d me up and a diagnosis of Aids. I lost my house career as an electrician and had to file disability. Now I am in an apartment in NC where people are nosey and think their sh** don't stink walking around with their dogs and looking at everybody else. I used to have my own house, a good thing going and now I am back at square one dealing with neighbors that are nosey, people breaking in cars and all that. I'm done at this point and the amazing thing is I see these people and I know they are snubbin their nose at me but e do they know, Ive been a US Marine, an USNR and an electrician for 15 years prior to my illness. Ive bought 2 houses and did that after being homeless in the 90s. I completed a 4 year trade school even when I had HIV. Now I feel I'm looking at the same old bottom feeding people who wouldn't give you the time of day if you asked for it yet
if they have problems they wont hesitate to ask you if you can help them. I don't want to say they are losers but in my eyes they are...they look at you with judging eyes and its not just the HIV, its to all people who are down. Its the old saying, nobody notices until your dead. Its so true and as at 49 I come full circle in my life I realize that way too many people are shallow and judgemental in this world. They care about what they have and that's all, no compassion for others. I spent 1 month in ICU and my wife was told I had two days left to live but I survived. HIV and Aids has taught me whats important, its not the crap, the car, the house none of that, ts all BS, Ive had it and lost it numerous times. HIV has taught me to see beyond what most people see in life, its shown me mortality and that none of us are immune to death, the crap we acquire will not be going in the grave with us, that's what Ive learned. Now if everyone had a brush with death or got really sick, maybe then we would have a society that didn't judge but truly understood what really matters in life,,,..
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davidh,
I understand you mean well, but as someone who wasn't diagnosed until 2005, you should not be posting in the Long Term Survivors forum. The LTS forum is only for members who were diagnosed pre-1996 and the advent of HAART.
Please make sure you read the Welcome Thread (http://forums.poz.com/index.php?topic=11166.0) stickied at the top of this forum. Thank you for your cooperation.
Ann
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Hi, I've always been somewhat of a night owl. I look decent except for the huge bruises on my forearms, hands & shins. So now that it's summer, i go out more at night. I also go to the bars & gay hangouts that are on the dark side. Over the weekend, we went out to eat an early dinner & I was surprised that no one said anything about the new bruises on my forearms; or seemed to stare at them.
The AIDS Support Group is very well accepted in this small, gay town. Maybe, as long as they are not open bruises, people don't mind, or maybe they think they're bruises from a bicycle crash. Tourist season has started & there's lots of competition on the street between people, bikes & cars. I'll have to ask my neighbor; even my str8 neighbor answers phones at the ASO. I'm glad you brought up the subject Jim, I know that it's difficult to talk about. hugs from Provincetown Deiby
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I missed this thread and will have to read through it.
modified cause I remembered the zoom to read function
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OK, now I'm confused. Are YOU getting sicker and sicker? Or are you trying to work through what we witnessed?
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OK, now I'm confused. Are YOU getting sicker and sicker? Or are you trying to work through what we witnessed?
First thanks for everyone responding. I'm not trying to confuse people or be inconsistent. Nor to whine and moan. I have therapists, doctors, and lawyers to do that with. But the bottom line is I am getting sicker. The trust company handling my father's probate, and my attorney, asked my HIV doc for a prognosis and timeline of my health so they can better disburse monies on my needs. He said five years max. Unfortunately everything hit the fan about three years and has been a considerable downward slide. Doc's say it is having the HIV for so long, the toxic meds I have been on since 96, age, and perhaps genetic stuff. They really don't know what to do but treat the symptoms. I just want to enjoy life for each moment I have.
As a sideline, we all know this disease is different for everyone, so my situation may be more or even less severe than others. Either way, it's tough!
Thanks again for all your support and comments.. Better yet, your understanding.
Best,
Jeff
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'Tired of people saying "you look like you're loosing weight, or look really sick."'
It could simply be a clumsy way of expressing their concern for you and trying to open a dialog. You choice as to whether you widen the dialog.
If the comment is unwelcome tell that they "look fat", or that "their ignorance is really showing", that'll shut them up.
I've found it's very rare for people to comment on visible health issues. I have visible KS lesions, the only person to ever ask me what they were was my younger sister and that was a welcome conversation. I found out more about some of the health issues she has too.
By contrast my other sister who never inquires as to my health (denial?) constantly bangs on at me about how I should be in full-time work. There's a growing distance between her and I. Too many things that can't be discussed.
Anyway with my CD4s up to 40 and my KS not getting any worse, so I've enrolled in a vocational course and hope to be back to some sort of work by Xmas.
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I agree with harleymc when he says that "It could simply be a clumsy way of expressing their concern for you...." Much the same, strained conversations, takes place following the death of someone dear to you. People, with good intentions, can say the darnest things at times (I'm not immune) in attempting to convey compassion or sympathy with/for you.
This notion that HIV is now a chronic but manageable disease doesn't help either. For many of us LTS's this has alway been BS but that doesn't stop the press and politicians from repeating the lie ad nauseum. The net result is the disconnect between the reality we inhabit and the wishful thinking of the masses.
Ironically, since I don't look sick, I get the opposite remarks like, "You look great!" Hell if I know which is better, the truth or a white lie.
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I get comments like . . . "how do you stay so trim" . . . especially if I go to the gym and work out. Guys - especially straight guys want to know my "secret" of how I stay so well defined. I'd like to come out and say "take this cocktail of drugs" and after a few years or so develop Lipoatrophy. It's not about diet or exercise. But of course I give in and tell 'em it is all about diet and exercise, not mentioning of course of my constant battle with IBS or diarrhea and the fact that my nerves don't allow me to lift the kind of weight I could years ago. But what do they know?
Someone I had seen on a regular basis did comment about how I was loosing weight . . . but only because he was jealous that all the working out at the gym has done absolutely nothing for his gut. I do tell him about my so called co-conditions that disallow certain exercises and that makes it seem reasonably acceptable to him (that not lifting heavy weights means I can't gain muscle mass). . . but later, when I'm caught lifting 'baby weight' I'll be rediculed by some other jerk saying, "You should put some weight on there."
I only see my family maybe once a year, so the change in appearance isn't really connected to my HIV condition - it's assumed I'm just getting older. Yeah, that's why my face looks like a deflated balloon and I have no butt to fill out these jeans AND my waist can hardly keep my pants up. But when I come around next year with my new Sculptra injected face, they'll just think I have mega bucks to get cosmetic surgery, when, in fact, the Insurance paid for it - or at least most of it. It's amazing what people think, when it's the farthest thing from reality.
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After reading these posts maybe I am over reacting. Under a lot of stress right now, so maybe putting out negative vibes. I will say my significant other in LA is experiencing the same stuff as I. Don't know if it is just coinicidental.
Thanks for your posts!
Appreciate it!
Jeff