POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: whiteboy500 on April 09, 2010, 02:54:05 am
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>:( I don't know what is wrong w/ me. I don't know if it's because i'm in my mid 40's or what? But i can't take living w/ HIV/Aids anymore. I don't look normal anymore, my hips are gone, my ass is bone, my feet are bones....i have facial wasting but i got it filled (more pain than it was worth) i've got fat deposits around my neck and especially my fkng stomach. I just don't have the desire to fight w/ this disease anymore. Nobody looks at me anymore, i used to be good-looking! I know it's vain and i don't want sympathy but i can't live w/ looking at myself ....i just hate being me. I cry for long periods and it never helps...i'm still old and positive. Does anybody else ever get this way?
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Your post touches on so many subjects that reflect life for almost everyone and those we with HIV/AIDS have the special privilege of experiencing.
We all get older and in our youth-manic culture, seemingly more pronounced among gay men but certainly not exclusively so, it's often not pretty or we don't feel attractive. Having lipo-XXXX problems is devastating for many people -- my ex, who I haven't even seen since before Katrina, looked like a skull with skin. I hope he's had the option of facial filler(s) because he felt like Lon Chaney or Nosferatu. My calves look like cardiovascular relief maps but luckily the rest of me is chubby enough the facial lipoatrophy isn't too noticeable. A casual attitude toward shaving helps too.
Luckily I've never liked my looks so getting uglier hasn't been as much a deal as for others. For about 3 years in the 1980s I thought I looked almost decent (which happened to coincide with contracting HIV, living the clean, healthy life [except for the acid and MDA... but booze has always been my failing], and starting a job I loved for 15 of the next 20 years).
Have you tried support groups (if available)? I don't mean to be pat but talking to others who have similar problems can be useful. I haven't been to one in years because I always feel guilty about being the luckiest bastard in the lot.
Have you been counseled/tested for depression or other typical illnesses more poz people experience than the general population? Frequent crying and relentless sadness may have logical reasons but they still can spell depression. After 30 years of drinking depression away (well, getting shitfaced & passing out every night if possible) it dawned on me it might be an issue. After kissing lots of toad pills finally something helped and the hackneyed "like night and day" actually happened. I also did a lot of talk therapy and one MSW in particular was a life-saver.
Were it not for proximity to unconsciousness I'd babble longer but you get off lucky.
Good luck.
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Sweetheart this winter has been the pits I relate to the feel off your piece if not details, growing old with long term HIV is hard work, now deep breath and accept this cyber cuddle
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I understand your sentiments. But we have to fight and live each day to its fullest. I too often don't feel well or look in the mirror and don't recognize the face I see but I have to much to do yet. Take a long walk, breathe deep, go for a road trip, get a pet, take up a new hobby, volunteer! Please fight and don't give up!
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Hi whiteboy . I am glad you are asking these questions and reaching out , sometimes that's all we can do when we feel this way .
I will be 48 this month and growing old with HIV does have its special challenges doesn't it .
A few years back I was feeling mighty low myself and wondering what did I have to look forward to going into the next phase of life . It took time but I made it through that and you can to .
I know my words are inadequate to bring you comfort or answer these questions most people ask themselves at some point in life with or without an HIV diagnosis . I'm just wanting to send a bit of positive energy your way and let you know there is someone out there that hears you and can relate . Hang in there guy it gets better .
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I'm not sure to what to tell you, but that living with this is terrible. I suffer from severe skin issues which have been almost as debilitating as what you describe. So individual for everyone. One day at a time, and keep your eye at the light at the end of the tunnel. I'm right there with you. You are not alone!
Take care of yourself,
JM
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Hey Whiteboy,
I am right there with you.
The other day at work, I had my back to one of my exchanger clients. I am concentrating on what I was doing, then he said to me, "What happened to the back of your head? You got (sic) cancer or something?"
About a week before that, I was chatting with a friend of mine about weight, and the fact I was trying to lose a few pounds.
The friend said, "Yeah, you're skinny all over except your neck, which is really fat. What's up with that?"
I was discussing meds with someone the other day because he has apparently had a viral breakthrough. He is really concerned about lipodystrophy and said, "I don't want to have what happened to you happen to me." He remembers me from before the lipo made its appearance and commented on how fast it seemed to appear on me.
A few years ago, someone I knew was standing next to me in the showers at the gym. I had my back to him, and he suddenly reached over and poked my buffalo hump, then began quizzing me about it.
When the shower incident occurred, I was pretty upset. But nowadays, I use these types of situations as an avenue for education. It opens the door for me to discuss HIV to those who are negative and haven't a clue - often literally - that it is still here.
For those who are positive, it gives me the chance to reinforce the need to monitor not only labs, but your body, etc., and to be proactive.
For the exchanger, it gave me the opportunity to talk about the need to be safe and cautious when he is shooting up. I became the tangible example of what he should try to avoid. I think sometimes that seeing is believing, and I think this guy left my office believing.
I am not trying to make light of your feelings of despair or hopelessness. I just wanted you to know you aren't alone in these feelings. I have learned to live with my new body, even if I don't like it.
I hope you are able to find a way to accept your body changes as well.
HUGS,
Mark
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I understand your pain honey....people have no idea, do they?
I will see someone very nice looking, and kind of look at them in that cruisy way that gay men do, and no one gives me a second look; it's as if I'm invisible. It hurts.... and if I have one more person say to me "Oh, you look so TIRED", or "are you o.k.? you look sick" I will scream....
I can't help it that my face is sunken and saggy....and yes, it might help if I went around with a big smile on my face all the time, but that just isn't me.
Find something rewarding in life that has nothing to do with gay culture/looks.... take up a new hobby, volunteer to help at a shelter, hospital or nursing home....it does wonders for your psyche.
Many hugs,
Alan
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Well, being female, I can tell you I've had people in stores ask me "how far along are you?" (pregnancy question). It does get aggravating. And I can tell you, sometimes when I see these hottie 20-something women running around I think "yeah, I used to be like that, and now look at me." But, what can we do. My legs are super thin, my stomach is like, well, a bit bigger than a basketball.
What Mark suggested is good advice. Education is always good. Though, where I live, me talking to complete strangers about Aids may make the news. Ah well, live and dream.
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I certainly can relate. I am going through a similar phase now where I am just tired of seeing doctors. I am tired of the blood tests, pills, etc. But, hey, it is all worth it when I realize that many of my friends didn't survive. I sort of owe it to them. I hope that just knowing that there are many who can relate to what you are experiencing will help you get through it.
Keep your chin up.
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It is such a hard burden you are carrying, I hope it becomes lighter for you soon.
Namaste (may the divine in me bless and honor the divine in you)
Tracy
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We have all, in one way or the other, struggled with these feelings.
Getting older with HIV and HAART is a challenge and as Alan said so well.. people have no idea, don't they.
No they don't. Not in a million years can we explian what it feels like.
Maybe we have to let go of our bodies sooner than the general public, but everyone will go down the same road eventually.
I can also relate to the fact that you feel like giving up. Gosh, have I been down THAT road.
Somehow I always manage to drag ( or be dragged) out of it and continue my walk.
But yes, i sometimes feel like an old man on a relentless challenge in the desert.. so. Just know that we understand what you talk about.
Keep it coming. We are here to listen.
xx hermie
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I feel for you I feel the same way. Really I do. Sometimes it just gets too much for me to handle and I have no friends anymore. All I can say for that is they were not really my friends to start with.
I get that way then someone I don't even know will come up to me and say something that makes me think a little more positive in the good way I mean.
Take care and hang in there.
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I hope things get better for you! In the mean time, this thread has opened up a question that I have, for which I'll start another thread.
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I hope things get better for you! In the mean time, this thread has opened up a question that I have, for which I'll start another thread.
Gentle reminder. This forum is for long-term survivors, please read the guidelines. If you have a question, make sure you start your thread in the appropriate forum. Thanks.
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OH MAN I DO UNDERSTAND HOW YOU FEEL I HAVE BEEN POZ FOR 21 YEARS AND IM TIERED OF THE PAIN, WELL I DO PRAY FOR YOU.. dAVID