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Emotional Toll of Long-Term Survival
#65017 - 05/28/03 04:51 PM
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I would like people who have survived with HIV for a long time to give me some help. I'm stuck emotionally and spiritually. I've had HIV for 23 years and AIDS for 10, along with a stroke, cancer, and epilepsy. I'm physically doing quite well despite that. But mentally, I'm having a hard time and have done for about ten years. No matter what (including LOTS of therapy) I can't seem to make it budge. It is as if, having lost so many friends, my career (as an HIV specialist), and my natural well-being, I can't work out what it's all about anymore or why I'm alive. It is as if all the meaning has been destroyed and I've come to a stop. I've started working on a chapter on the treatment of emotional issues in people with long-term HIV. Trying to write this chapter is not only a way of trying to start again, but also generally therapeutic. It's clearly a large dose of the 'wounded healer'!
Now, I suspect that I'm not the only one to have faced these issues; I would really appreciate it if people with long-term HIV would let me know what they have been challenged with emotionally and spiritually and how they have coped. You can email me at docpsych@home4us.org - I don't know if I'll be able to respond to everyone, but I do appreciate every bit of help, and will try to make it help others too. Thanks very much for your help.
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How have you coped? What a survivor!
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hey doc.
i am interested in working on this with you. i think my information and knowledge may be of good use to you. how much better does it get than "hands on experience" i am poz and ready to break the cycle, maybe an emotional aspect would be healing..
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I was in one of the first ( san francisco)SHANTI emotional support trainings in 1983, I lost 27 friends to AIDS in 1983 and stoped counting.. I lost my brother to AIDS in 1995, I have been pozitive since 1984 full blown 13 years later in 1997 w/toxo... four leaisons in my brain..
after a hard recovery I left a toxic marriage, I got lucky and found the love of my life and started gardening... Growing a garden and trying to live my life as a person not a person w/aids... I have a great attitude most of the time, I complain a lot because I have a lot of pain, but i feel greatful for every day.
sounds like you have served enough. Think about yourself and have some fun..
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New kid on block has had HIV only 12 years. No OIs and pretty good health.
All the posts are focused and reasonable. Our unhappy care-giver should allow himself a rest to "regroup" for an unlimited amount of time. Dealing with HIV 24/7 beyond your own infection might not be the best thing for now (or ever). I try to live denying my HIV, although arthritis and lipoatrophy and lipodystophy make that harder than ever. It's not that I ever denied having HIV, as much as I have stayed away from HIV environments (including sick rooms, support groups) for all but a few hours at a time. That's just me.
As for lovely Diana and her good advice, I love gardening too, especially bamboo. Those old ladies gardening have known the secret all along. Personally, I love painting even more. The truth is fighting a disease is not reason enough to live. Life has its own rewards, simple pleasures, like the warm sunlight on a window sill. Or a cool little kid. Or your church or union. Whatever you get a kick out of...
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I saw your note and it sounded like I had written it myself. I've been pos for 18yrs and have chirrosos from HCV. I wish I had great advise, but as you know it's a lot more complex. If you are still interested (your post was 6 mos ago) I'd love to talk about different coping plans as well as the brick walls that we have hit along the way.
Jim
barbeccra@aol.com
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