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Author Topic: Long term survivors under 50 where do they fit in?  (Read 14037 times)

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Offline hudstar

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  • Posts: 130
  • 2010
Re: Long term survivors under 50 where do they fit in?
« Reply #50 on: August 13, 2007, 07:23:27 AM »
Hey JeffreyM, it's interesting you talk about being diagnosed with Lazarus Syndrome. I kind of went the other way when diagnosed with Seasonal Affective Disorder. For years I felt the seasons affect me physically and to my mind saw it as some kind of pagan gift and that nature spoke to me - i was kind of embarrassed to mention it until my condition was actually diagnosed. In short I go into hibernation like an animal does during winter, my body shuts down physically, I lose my appetite and sleep for long hours- whereas in spring and summer I am abnormally active. Its some kind of genetic condition not usually found in people but found in most animals!  It's ironic how those feelings of being gifted kept my spirits up during the bad times and I accept the diagnosis at the loss of what i saw as special. It is good you had your diagnosis to better understand yourself and that can only be good.
diagnosed 1988
POZ personals - hudster

Offline tuggem

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  • Ron Hudson, same body, new face
    • 2sides2ron
Re: Long term survivors under 50 where do they fit in?
« Reply #51 on: August 13, 2007, 09:10:39 AM »
Nice to hear some validation of Lazarus Syndrome.  I went through several years (and still have some aspects now) of identity loss (I identified with my job which end abruptly with disability) and the need to redefine myself.  With therapy, I got through the time, but it was when I was encouraged to write by Jamie Catto of 1 Giant Leap and Roger Humes of The Other Voices Poetry International Project that I really began to find myself and my voice again.  It took the sense of contributing something toward some kind of legacy to bring me out of the syndrome.

However, I still find the syndrome involves something akin to survivor guilt or Post-traumatic stress disorder.  As I have seen posted here before (sadly, I cannot remember who said it, but...), those of us who lived through the worst of this illness were forever changed by the deaths of our friends and the images of decimation by HIV/AIDS.  It is difficult for us to move on from that to see ourselves as heading toward manageable disease rather than death.  Newly infected people seem to have an easier time with this, in addition to not having to experience some of the harsher drugs that we took in the early 1990s.

I am very glad to see a dialogue about this topic.   Thank you for posting.

Ron
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline redhotmuslbear

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Re: Long term survivors under 50 where do they fit in?
« Reply #52 on: August 13, 2007, 10:49:12 AM »
However, I still find the syndrome involves something akin to survivor guilt or Post-traumatic stress disorder.  As I have seen posted here before (sadly, I cannot remember who said it, but...), those of us who lived through the worst of this illness were forever changed by the deaths of our friends and the images of decimation by HIV/AIDS.  It is difficult for us to move on from that to see ourselves as heading toward manageable disease rather than death.  Newly infected people seem to have an easier time with this, in addition to not having to experience some of the harsher drugs that we took in the early 1990s.


I believe that we're getting distinct phenomena -- "Lazarus syndrome" and "survivor's guilt" and PTSD -- confused because they occur simultaneously for many long-term survivors.  "Lazarus syndrome" has historically been related to believing death is near, forsaking all future plans (and racking up a heavy load of debt), then finding that a "full an natural" lifespan is ahead.  I dealt with Lazarus Syndrome lbefore HIV, thanks to my neurosurgical history, though I have not experienced it with regard to HIV-related illness. 

From the National Institute for Mental Health:  "Post-traumatic stress disorder (PTSD) develops after a terrifying ordeal that involved physical harm or the threat of physical harm. The person who develops PTSD may have been the one who was harmed, the harm may have happened to a loved one, or the person may have witnessed a harmful event that happened to loved ones or strangers. "  Related to HIV and the early days of AIDS, there are far more non-HIVers than HIVers living with PTSD as a result of our losses.  "Survivor's guilt" is one aspect of PTSD.  Being a survivor of family and partner violence, I got an extra helping of PTSD from the 80s and early 90s!  Woo hoo!

http://www.nimh.nih.gov/publicat/NIMHreliving.pdf

I'm not meaning to nit-pick, but using inaccurate terms can be as dangerous for us psychologically as the damned virus is to us physically.

Peace,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline Miss Philicia

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Re: Long term survivors under 50 where do they fit in?
« Reply #53 on: August 13, 2007, 10:59:05 AM »
Well said David.  I agree that there are basically three mental components, yet for many they overlap and merge.  It's probably a good idea, however, to be able to discern each component.  Only by understanding what is going on in one's head can one begin any sort of healing.

Anyone having major issues with these should, of course, potentially consider indulging in some therapy sessions even if only short term.
"Iíve slept with enough men to know that Iím not gay"

Offline tuggem

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  • Ron Hudson, same body, new face
    • 2sides2ron
Re: Long term survivors under 50 where do they fit in?
« Reply #54 on: August 13, 2007, 02:10:38 PM »
Interesting.  I wasn't aware that heavy debt, in and of itself, figured into the definition of Lazarus Syndrome.   (Thank goodness I didn't order every credit card I could as some of my friends once did.)  I thought, instead, that the syndrome was defined by recognition of one's impending death, the so-called "burning of bridges", such as leaving work or coming out to everyone you know as gay and/or poz when you no longer give a flip how they react, and then finding health again.  The key issue, I thought, was how to redefine your life once you have been through the act of preparing for death and death does not ultimately come.  I have heard the syndrome referenced as similar the experiences of Holocaust survivors, both being defined by trauma and post-trauma survivorship.

Yes, I agree, PTSD, survivor guilt and Lazarus syndrome are all independent entities that often overlap and psychotherapy is very helpful in dealing with all of these issues.  I was lucky to get both psychotherapy and mentorship by people who encouraged me to move on.
Lexiva, Videx EC

About 18 other meds to manage my side-effects/concomitant issues like diabetes, renal insufficiency, hypertension, hyperlipidemia, etc.

Poz since 08/25/1985 or earlier

Safe journeys!

Ce fut une belle aventure...

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: Long term survivors under 50 where do they fit in?
« Reply #55 on: August 13, 2007, 02:37:32 PM »
Interesting.  I wasn't aware that heavy debt, in and of itself, figured into the definition of Lazarus Syndrome. 

Debt accumulation isn't a "requirement," though it is often seen among people who believe that if death is imminent, why not let someone else pay the bills?  I know several men here who went quite lavishly into the throes of death on maxed-out credit cards, only to have protease inhibitors save them and force them into personal bankruptcy.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline Miss Philicia

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  • Posts: 23,873
  • celebrity poster, faker & poser
Re: Long term survivors under 50 where do they fit in?
« Reply #56 on: August 13, 2007, 03:10:20 PM »
::raises hand::
"Iíve slept with enough men to know that Iím not gay"

Offline AlanBama

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  • Posts: 3,604
  • Alabama: the 'other' 3rd World Country!
Re: Long term survivors under 50 where do they fit in?
« Reply #57 on: August 13, 2007, 03:47:36 PM »
:raises hand also:

 ;)
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

 


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