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Author Topic: HIV Survivors Fatigue, Stigma, PTSD:  (Read 945 times)

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Offline jm1953

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  • Posts: 268
HIV Survivors Fatigue, Stigma, PTSD:
« on: March 16, 2015, 09:46:32 PM »
As a LTS of almost 30 years, about half my life, I join the shrinking group of us who are the trailblazers of this disease and historians.  We watched the horror of numbers of friends and loved ones pass.  We were the ones who withstood AZT until studies were released for PI's, 3TC and others that really saved our lives.  But not without consequences of having endured the virus for 20+years, the endless side effects of new medications, depression, and aging, only to name a few.  But, for me, and apparently others, a stigma seems to have evolved about LTS by people, and even physicians who didn't experience what we did.  I'm tired of trying to look like I don't have AIDS at this point through countless Sculptra treatments, working out, testosterone, and lot's of explaining to people when they say "you don't look good!"  What we have to go through just to look somewhat normal because the signature "AIDS look" is hardly visible among newer patients anymore.  I've encountered unkind remarks by family, physicians, my family, and even friends who have HIV but not hardly as long as us.  There are very few support groups of therapists who work with LTS patients.  Even my new HIV doc, who I'm not sure I will stay with,  looked at me as almost an alien, boasting that about half of his patients are folks uninfected taking Truvada to prevent getting HIV which I take major issue with.  I'm glad we have this forum to relate to one another with.  Without it I surely would be very lonely and misunderstood.  We get it, so many other people don't.  Just like having depression, which I also have.  I'm attaching a long article that appeared in POZ mag in 2013 by an LTS describing the stigma and challenges he faces and research he has done on other LTS.  Take a read if you want.  Couldn't copy the link, only the copy.  Just needed to get this out.  Below is the copy:


Thu Jul 3, 2014 8:32 am (PDT) . Posted by:
"jules levin" jules72orange
www.natap.org

There is no discussion by NIH, NIAID & research leaders about planning & preparing for health, social & other needs for aging HIV population

HIV & Aging: Psychosocial, mental health, and behavioral issues of aging with HIV - (06/16/14)

"As a substantial proportion of people with HIV approach retirement age, policy makers need to develop new policies or adapt the existing ones to improve their social and economic outlook. For example, reforming retirement benefit programs could allow people with HIV to remain in the workforce as long as possible, and providing better integrated housing models could remove some of the barriers to subsidized housing and ensure that retirement homes and long-term facilities become more welcoming places for older people with HIV.

"Aging for people with HIV may be more challenging than for the general population because of HIV-related stigma, loss of friends and social networks, and the detrimental effects that HIV and antiretroviral treatment have on normal aging processes. Older people with HIV are more likely to experience mental health and neurocognitive impairment than their HIV-negative counterparts, as well as more social isolation as a result of decreased social participation and engagement. People develop different approaches for coping with the challenges associated with aging with HIV.”

"HIV are less happy, less resilient, and have poorer attitudes toward their aging”

"They also report lower physical and mental health, and experience more negative life-events, anxiety, and perceived stress”

"The more medical comorbidities someone experiences, the poorer their quality of life [11,12].”

About 50% of people living with HIV will develop HIV-associated neurocognitive impairments and disorders (HAND)……..Cognitive function in HIV is associated with a host of medical and psychiatric factors [24,25,27], including demographics, HIV disease severity, substance use, and comorbid conditions [24,25,28-31]…….study of people living with HIV (n = 106) found that older age was associated with about a five-fold higher odds of developing memory deficits: about half of those over age 50 had measurable memory impairment [32]. In one study, the driving performance of older people with HIV was less efficient and slower than their younger counterparts

Older adults living with HIV are at an increased risk of social isolation because of less social participation and shrinking social networks. …..As people with HIV age, they may lose friends and find it increasingly difficult to make new social connections [19,42,43]. In some cases, they may find it easier to be alone to avoid stigma or discrimination, or they may not have the energy to be socially engaged.

In qualitative studies exploring the experiences of older adults with HIV, the main theme is uncertainty about the future and the unpredictability of the aging process [9·,18,19]. Older people with HIV often compare themselves to their HIV-peers and report experiencing an earlier and more rapid decline in health, which increases anxiety about the future [18,19]. Other uncertainties include concerns regarding the ability of healthcare providers to provide high-quality care at the intersection of aging and HIV; the financial situation and transition to retirement, including adequate pension; the availability of appropriate long-term housing; and the decreasing ability to care for themselves [20·]. In addition, older adults with HIV often need to negotiate multiple identities and the resulting stigma(s) attached to those identities, including ageism, homophobia, and HIV-related stigma [12,18]. Although ageism plays a role in the overall stigma experienced by older adults with HIV, some also report experiencing stigma and rejection from their HIV- contemporaries [19]. Many express concerns about being discriminated against by other older people if they have to move into old-age care facilities [18,20·]. Whereas disclosure is important for people with HIV to receive social support, perceived and internalized stigma affects disclosure among older adults living with HIV [21,22].

The prevalence of depression among older adults with HIV differs according to subpopulations and geographical settings. In a Brazilian study of people with HIV over age 60, 28% experienced major depression, and women had 10.65 times higher odds of being diagnosed with major depression (95% CI 8.96-12.33) than men [15]. An Ontario study of 1129 older adults with HIV found that, compared with heterosexual, bisexual, and gay men, women had the highest mean scores for depressive symptoms (using the Center for Epidemiologic Studies Depression Scale) [16]. However, in a study of older adults with HIV in the USA (n = 904), similar proportions of men and women experienced depressive symptoms (61% for both groups) and loneliness (34 and 28%, respectively) [17]. Differences across the studies may be because of different sample compositions and different measures or cutoffs to evaluate depression and depressive symptoms.

In terms of sex differences, Storholm et al.[17] found that men were significantly more likely than women to report a lack of positive relations with others (50 vs. 39%), purpose in life (51 vs. 39%), self-acceptance (51 vs. 42%), and environmental mastery (53 vs. 35%). Mediation analyses showed that individuals with greater minority burden (i.e., the number of minority statuses, including being gay or bisexual, nonwhite, disabled, low-income, foreign-born, and speaking English as a second language) experienced greater HIV-related stigma, which was associated with greater mental health burden. Another study, however, found that gay and bisexual men reported higher mental health-related quality of life than heterosexual men and women [16], and gay men reported less HIV-related stigma than women or heterosexual and bisexual men, which may be associated with the supportive networking within the gay community, better programs and services from AIDS service organizations, and the experience of having lived with HIV for many years.

The more medical comorbidities someone experiences, the poorer their quality of life [11,12]. In a United States multistate study, 94% of people with HIV aged 50 years or older (n = 452) had at least one other chronic illness, with an average of three comorbid conditions (including depression) [13]. Commonly reported chronic illnesses included high blood pressure (46%), chronic pain other than headache and back pain (45%), hepatitis (39%), arthritis (35%), diabetes (21%), and major depression (14% reported symptoms consistent with major depression). The presence of more chronic conditions was also associated with decreased functioning [11,12]. Another United States study of 262 people with HIV found that older people with HIV had significantly higher medical comorbidity burden (as measured with the Charlson Co-morbidity Index): almost half had at least one major medical comorbidity, including diabetes (18%), neurocognitive impairment (15%), and malignancy (12%) [11]. In a cohort study of 1230 injection drug users (IDUs), HIV+ participants had an increased risk of frailty (odds ratio = 1.66; 95% confidence interval, CI 1.24-2.21) [14], and depressive symptoms were independently associated with frailty.

"Summary: As this field of research evolves, many research gaps need to be addressed, including a better conceptualization and measurement of successful aging and the development of high-quality integrated care, programs, and services tailored to the needs of older people with HIV. A more integrated policy response is needed to improve the psychosocial and economic well being of older people with HIV."
Positive 28 years. 1/4/2015.  Current CD 4: 925: Viral load: less than 50.
Current drug regimen, Trivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline bubba53

  • Member
  • Posts: 362
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #1 on: March 16, 2015, 10:58:01 PM »
Hey JM
I hear what your saying, I think I was infected before this disease even had a name.
I too have had injections in my face, and lost all my body fat,
Only to have it come back in all the wrong and abnormal places.

I was a hot shit in my younger days , which made it all the harder
When my appearance changed seemingly over night.
Some of it is age, combined with HIV and the drugs we took in the early days,
Don't really know. Sometimes I wonder what I would look like if I were aloud to age
Normally. I try not to go there anymore , I don't attempt to explain my appearance
I am just me now , only different !  Most times I am proud to have survived those horrible years ,  there was no decent health care or financial support.we were alone and on our own .

If we were lucky enough to survive we , had to pull our selves up by our boot straps
And move on which was no easy task. It was like starting over, makes me thankful to be where I'm at in my life. This is my support group now , some listen ,some don't
Some understand, some don't. I still feel better spouting off !
Nice to meet you JM , Wade



"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline Pozinmaine

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  • Posts: 13
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #2 on: March 18, 2015, 04:57:36 AM »
Hi there,

Thirty years positive here.  Things are certainly different for LTS.  Hearing someone else articulate it has helped me, on this very sleepless night, to feel less alone.  I am only now beginning to understand all that has happened to me, to my friends, to my world.  AIDS is still unfolding for each of us in different ways.

Most LTS not only deal with the toll of their own disease and their treatment, but have the distinction of also watching it ravage the lives of others.  It's a double whammy and many of us are in rough shape mentally and emotionally as a result.  We have a very different experience than more recently infected individuals.

The conversations are beginning.  I'm hoping that the formation of groups like Let's Kick ASS will help to get the ball rolling and ensure that we are directing our own futures. 

I'm glad to not be alone in this...these forums are a great support even for a lurker like me :)



 



Offline aztecan

  • Member
  • Posts: 5,482
  • 29 years positive, 57 years a pain in the butt
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #3 on: March 18, 2015, 10:16:09 PM »
Hi all,

I will have my 30th "anniversary" in July, although it is likely I was infected prior to that.

I know what you mean about being the outsider. I was told by a young man entering the prevention field that we LTS's are from a bygone era and "we don't think of HIV that way any more."

Pompous twit.

I am an older gay man, who has had all the slings and arrows that HIV and the early meds can throw.

I had a hump surgically removed from my back, but still have the goiter-like neck, chipmunk cheeks, and even growths on the back of my head, which were also removed, but have returned. Then, we have the visceral fat, that no exercise even touches.

I only mention all of the lipo issues because, invariably, my well-meaning friends decide I need a partner/lover/husband and go about setting me up with someone.

I don't feel desirable, and have explained I don't want a matchmaker. Oh, and of course, everyone they dig up is negative, who, for the most part, haven't a clue what our lives are like.

OK, enough of rant, but it feels good to know I can do that here.

HUGS,

Mark


"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline bubba53

  • Member
  • Posts: 362
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #4 on: March 19, 2015, 10:32:22 AM »
Hey Mark
If you see the pompous little twit again ,
give him a swift kick in the ass from me, all of us are from a by gone era ?
Seriously ! he said that ?

I had my hump removed over ten years ago now, luckily mine has not come back.
Don't you just love going over your medical history with one of those youngsters.
Most are completely clueless  when you try to explain your surgery's and lipo issues.

I try to keep a good attitude, and enjoy my life, but sometimes you just need to bitch ! It is therapeutic, especially when conversing with your peers who can relate,
and is nice to get others perspectives.

At least they don't snap on rubber gloves to take
your blood pressure anymore... LOL

 
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline aztecan

  • Member
  • Posts: 5,482
  • 29 years positive, 57 years a pain in the butt
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #5 on: March 19, 2015, 10:24:05 PM »
At least they don't snap on rubber gloves to take
your blood pressure anymore... LOL

Ain't it the truth!  ;)
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline flashdance

  • Member
  • Posts: 7
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #6 on: March 22, 2015, 06:03:51 AM »
Can I add to this discussion from the "other end"?

Recently, my mother has been diagnosed with "dementia". Now I (and family) are waiting for her to pass in Medicare supported hospice. But we ran into a problem of having Medicare cover her during her last days in hospice because Medicare requires a more specific diagnosis of "dementia". My mother went into the hospital recently and the hospitalist had to diagnosed my mother with "dementia-Alzheimer's" before we could move her into hospice.

Turning this back to a person living with HIV-AIDS....Has Medicare changed their requirements for an HIV+/AIDS person to have a certain collection of specific Medical codes before an HIV person is allowed to be moved into hospice?

Offline aztecan

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  • Posts: 5,482
  • 29 years positive, 57 years a pain in the butt
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #7 on: March 22, 2015, 10:51:56 AM »
Medicare will pay for only a certain number of days in hospice. I believe it is 100 or 180.

After that, the individual has to find another payor source. Medicaid may help, depending on how the particular state handles it.

As far as people with AIDS going into hospice, that person would need to literally be on death's door with no expectation of improvement.

It doesn't happen all that often anymore. Now, people are more likely to find their HIV well controlled, but that they now have lung cancer, etc.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #8 on: March 28, 2015, 11:04:53 AM »
Sorry I'm a bit late to this party.  It's just a fact that us LTS'ers from the pre-HAART days are becoming a rare breed.  We're inconvenient to many of the HIV and AIDS services organizations.  In some ways, it is not different from the way the elderly population is often viewed as an inconvenience (at least here in the US).  Unfortunately, I just don't think there are too many people interested in LTS'ers quality of life, so the best you can do is advocate for yourself.

There's a young gay HIV+ guy at the gym I go to, who is about as out and proud about his HIV as anyone I have ever seen.  He has no less than 3 biohazard tattoos -- including one large "tramp stamp".  Honestly, you can't help but stare, so a few weeks ago  made a comment to him one day to the effects of "nice tattoos".  He immediately told me (and by extension the last of the locker room) that he got them because he is HIV+, and proceeds to tell me a bit about his story (I must look like therapist, people like talking to me).  He's definitely the "out and proud" type both about being gay and HIV+.  He says:  "It's not like it used to be -- people don't get sick any more."   :-[   I told him to keep taking his meds -- I could only have dreamed it would be like that when I got HIV 25 years ago. 

Times have really changed.  Who would have dreamed of having this conversation in public way back then?  No one around us seemed to take note or even bat an eyelash.

I feel like I'm officially an old coot.  I'm going to start yelling at the neighborhood kids to get off of my lawn.

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline aztecan

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  • Posts: 5,482
  • 29 years positive, 57 years a pain in the butt
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #9 on: March 29, 2015, 11:11:51 AM »
Sorry I'm a bit late to this party.  It's just a fact that us LTS'ers from the pre-HAART days are becoming a rare breed.  We're inconvenient to many of the HIV and AIDS services organizations.  In some ways, it is not different from the way the elderly population is often viewed as an inconvenience (at least here in the US).  Unfortunately, I just don't think there are too many people interested in LTS'ers quality of life, so the best you can do is advocate for yourself.
...
I feel like I'm officially an old coot.  I'm going to start yelling at the neighborhood kids to get off of my lawn.

I agree, most of us LTS people are relegated to and old-timer's support group. The young folk don't really want to hear from us.

That is I'm here. At least people don't tune me out - at least not completely.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline aztecan

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  • Posts: 5,482
  • 29 years positive, 57 years a pain in the butt
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #10 on: March 29, 2015, 12:23:00 PM »
I think I needed coffee this morning. That post is has a few nasty typos.
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline OneTampa

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Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #11 on: March 29, 2015, 02:42:54 PM »
We "experienced travelers" know the main and back roads as HIV Survivors.

Newbies would be well advised to program their GPS with our knowledge.

 ;)
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline wolfter

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Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #12 on: March 30, 2015, 12:45:56 AM »
We "experienced travelers" know the main and back roads as HIV Survivors.

Newbies would be well advised to program their GPS with our knowledge.

 ;)

I like that!!!!!   

Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline guitargal

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  • Posts: 70
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #13 on: Yesterday at 02:44:26 PM »
I had the idea to apply for a grant, do a study on stigma/discrimination..has it become easier for the more newly diagnosed, perhaps since 2000 as opposed to LTS pre protease?..have the efforts in education about HIV/AIDS made it easier in a socio/economic ways for the younger crowd as opposed to us older folks?
Do the older LTS still feel stigmatized and discriminated ?  not "out", so many questions if you think of it..us vs them so to say…me being rural and not knowing many HIV people I thought it would be interesting to find out more about how people are coping now as opposed to then and are the efforts of ASO's and education helping make lives better, more normal for the people diagnosed the past 10- 15 years…?

Offline Joe K

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Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #14 on: Yesterday at 03:23:54 PM »
We "experienced travelers" know the main and back roads as HIV Survivors.

Newbies would be well advised to program their GPS with our knowledge.

 ;)

Many of them don't even know that we exist.  Our story cannot be told in the 140 character limit of Twitter.  We are living history of lives with HIV, our story can never really be told, as it had to be lived.  It's one of those time that you really had to be there to understand in its entirety.  We are rarely "media darlings" and with attention spans, that are now measured in minutes, if not seconds, our story has been surpassed by many of the treatments that saved our lives and that we lived through to still be here.

In a way, I envy the newbies.  I would rather be young and infected, with faint memories (if any) of a time long ago, when there was simply no hope.  We have lived a very special life, one impacted by more things, than I expect any of us ever imagined, yet somehow, we not only survived, we thrived.

While I want to see more research into PTSD and survivor's syndrome, it does not bother me that the newbies care little of my history.  My life belongs to me and it has served me well.  We all survived through horrible odds.  Sometimes, just remembering how challenging my life has been, gives me great pleasure.  Sure parts hurt, but I still came through it, to survive with folks like you and I just can't see a downside.

Joe

Offline bubba53

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  • Posts: 362
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #15 on: Yesterday at 05:52:56 PM »
Well put OT !
Some of us have voiced our personal experiences,
I think we are all in agreement we had it tough, but made it through.
Many of us do still have a constant up hill battle , because of our age ,and
HIV combined. Just thought about that on my way to get labs done today.
What a pain in the ass ! Doing this the last 25 years.
For that we are all proud in our own way. We are all SURVIVORS !

OT....
Those were two powerful sentences   ...
Thank You
"Who put the pepper in the....Vaseline  ? " Coffee Butler

Offline jm1953

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  • Posts: 268
Re: HIV Survivors Fatigue, Stigma, PTSD:
« Reply #16 on: Yesterday at 10:37:52 PM »
Lots of great posts on this thread.  I think we all agree we are in a group all our own.  Many times misunderstood or ignored because people don't get it or didn't go through all we did.  What makes me really crazy are people with HIV judging others at later stages sometimes even being HIV competitive.  All of us in this forum have our individual stories and experiences and I'm glad we can speak freely about them without feeling being judged.  I am very involved with American Veterans with Disabilities.  Some of their stories, the nightmares they experienced and witnessed during their tours are beyond belief.  And not being able to access the help they need to deal with their PTSD in  particular on a timely basis is unacceptable.  As the result many veteran's adjustment to civilian life is extremely tough.  Their families don't get what they have been through, many feel isolated with no one to talk to that can relate.  Many times I see similarities with the war we fought in the 80's and 90's seeing countless friends and loved ones die horrible deaths many in their 20's and 30's.  We had more support then, but not now.  Working to help get veterans on going counseling and involved in support groups is one of my missions.  Now if some organization or the government would step up to acknowledge and help those of us who are still in bereavement overload from the ravages of our war, that being AIDS and being Long Term Survivors.
Positive 28 years. 1/4/2015.  Current CD 4: 925: Viral load: less than 50.
Current drug regimen, Trivicay, Emtriva, Endurant, Wellbutrin, Clonazepam, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

 


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