As the length of life among people living with HIV expands, what are community members' worries about the quality of those lives? We asked this question at conferences and via our weekly newsletter; the responses trace paths to advocacy for a wide range of increased support for older adults living with HIV.
Comment by: Howard
Sat., Feb. 8, 2014 at 8:53 pm EST
I've had HIV for 28 years and on Atripla for some years and feeling well. Like others, I'm distressed by HIV stigma, but I feel physically vigorous. One point that I find really perplexing, though, is that these HIV forums, including the medical reports that often prompt these discussions, so often lump together everyone with HIV without regard to individual health histories and whether their virus is suppressed, as if that made no difference at all to clinical outcomes. So, I'm supposed to start worrying about neuro-cognitive effects / dementia, etc., even though I feel well? I see people here lamenting about how bad off they are, and how they worry about the future, and how lucky others were to have died 20 years ago. Okay, these are valid experiences, but these people don't speak for my experience. My HIV has been undetectable for some time, and that's not unusual, so clinically speaking there's no reason to think my condition must deteriorate. I wish that there was a way to participate in HIV culture without having to embrace the narrative of fragility and illness as the "normative experience." I want to listen to the diversity of experiences, and also see a bit more acknowledgment that we don't all need to be inevitably heading to some kind of "HIV doom" in old age. I'd like to see more upbeat narratives to balance the doom-and-gloom commentary that seems to get so much air time. Sure, the virus brings challenges, I'll be the first to agree, but I kind of wish people would please explain in better detail how it is that they're not deriving sufficient benefit from the fully suppressive treatments that are available in this era.
Comment by: shirley hilda
Sat., Feb. 8, 2014 at 3:29 pm EST
my issue is being HIV+ and nearing 60yrs old..having the ability to continue to work (being a baby boomer pretty much guarantees-retirement is not a viable option) while maintaining my undetectable status. i deal w/aging issues more than ever..gerd, incontinence, blood pressure blah blah and LONELINESS - where i live STIGMA! my doctor is getting too personal "THAT'S NOT AN OPTION!" here's the thing - there isn't much support where i live and orlando is a distance to drive...live long and prosperous!
Comment by: Billy Reed
Fri., Jan. 31, 2014 at 9:34 pm EST
I can say one things about myself having aids now going on 28 years is that I am finding my depression is higher and harder for me ro stay optimistic. But I keep trying to move forward.
Comment by: A fellow compatriot
Tue., Jan. 21, 2014 at 10:59 am EST
re:#16- This account is precisely the reaction I had, and still maintain the exact same dysphoria; so I wanted to share of few thoughts. Unlike a decision based on the emotional or cognitive affect from a positive result, this isolation is better understood as a syndrome. This differs from a change in how one adjusts psychologically to manage the additional conditions and acclimate to this awareness with a conscientious proclivity. Instead, what occurs is an introverted, dysphoric incredulity, that permeates our minds; contrasting a psychosomatic response to which the person is progressively developing recognized coping behaviors, and experiences a recuperative adjustment to their new circumstances(rather than say "as opposed to a person who recovers normally" as the "norm" is that people's reactions can vary enormously). The response as described in the #16(Michael James) is not what would be appropriately described as a coping mechanism. It is a defensive response to psychological disambiguity, such as in this case, where every aspect of one's life goes from unimpeded by hesitation in sex, health, all the things that where before independent activities with no umbrella of singular discourse(of a fearful pretense), that would relegate every activity as correlating in some possible complication that was a matter of consideration for oneself as unaffected and wary of contracting a condition, to a perception of being the one to be wary of. It is a feeling of being compromised, and a potential threat to anyone, and everyone, despite wanting to never cause pain. This behavior communicates that the person's psychological mentality is analogues with the thought: 'My life no longer matters(social life, dating, etc.) and I'm just waiting to die.' It is a painful mentality, yet one born from compassion. Thank you.
Comment by: James Fury
(New York )
Mon., Jan. 13, 2014 at 11:32 am EST
My main concern is what goes along with living long with hiv, I was diagnosed in 2012/13 with abnormal kidney function and I'm scared to death of being on dialysis, my doc tells me " your kidney is 70 percent in good health and I'm no where near dialysis, yet what will keep it that was, I don't smoke, nor do drugs, and I don't drink anymore...I even limited grain in my diet...so the question is how long can we live healthy without complications...or can it be done...can an hiv poz person live into their 70's with no problems as oppose to a negative person whom is out there drinking, smoking and eating lard, fat back and 3 lbs. Of bacon a day...we are all built differently but when can a generalization of how to avoid kicking the bucket be given...along with the facts that these wonder drugs been around for along time ...isn't it time to drop the prices and make these drugs more affordable and mainstream for people whom are suffering...not saying they should be on the shelf next to the aspirin ...but let it be more affordable ...These drugs are needed for us to live...and getting older and not being able to afford these drugs is a very scary reality..
Comment by: eric krieger
Sun., Jan. 5, 2014 at 8:20 pm EST
I agree with your article totally, I to worry about the affects of HIV and growing Older, im 40 now, diagnosed 6 years ago. But the biggest issue in my area (city of Trenton, NJ) is the local support, there isn't much here, although there 100k+ infected in this city. We need more Social acceptance in cities worldwide, I wish I could start something in my area, any suggestions? conferences I can attend? that you may know of?
im so glad your doing well bro! makes me smile :) I too am doing well, with the exception of troublesome Nueropathy in both legs, but it seems to be a major side affect of the HIV itself so ive been told by many Doctors.
Comment by: Veena
Sat., Jan. 4, 2014 at 2:30 pm EST
Am on Tenofovir Emcitrabine once a day and Nevirapine twice a day for past 2 years. Am putting on weight. Am facing enlarged breasts problem. How do I reduce weight ?
Comment by: Graeme Donlop
Sat., Dec. 28, 2013 at 2:08 pm EST
Now about 30 years w/hiv & AIDS comes along T-1 diabetes, neuropathy and lypodystrophy as well as E.D.. No blue pill or it's cousins work for me. Seems getting used to fatter and fatter scrotum is the challenge along w/internal belly fat from the extremities. The inner dialogue seems more important than the externals, yet so few I've met want to ever shift to such in conversation. Life just seems more and more fun w/Its' challenges. lol
Comment by: William Woodworth
(Haslett, Michigan )
Tue., Dec. 17, 2013 at 9:58 pm EST
I have lived with HIV for seventeen years. My health is reasonably well. HIV is not well understood here, even after nearly three decades. Fear, medical misinformation and stigma and prejudice is strong. Breast cancer gets a lot if coverage and support while support to those with HIV has diminished. I now live in a senior community with wonderful support though I am not open about my diagnosis. I was at my last place and had real problems. You must make the best of it and learn to live and love as much as possible.
Comment by: Jimmy
(Palm Springs, CA)
Fri., Dec. 13, 2013 at 4:56 pm EST
30 yrs HIV+ (maybe longer?), 22 yrs on Soc Sec disability with AIDS, and just turned 61: I can say it's been a very long, complicated, oft times heart-wrenching & very expensive journey with this disease.. loss after loss. Too many close friends, co-workers & partners died; thriving career up in smoke at age 39, gradual loss of community involvement & standing due to increasing debilitation, ever-mounting financial set-back esp. as out-of-pocket medical costs have skyrocketed, all now coupled with medical issues related to aging, some hitting prematurely & hard. All that's not to say there haven't been some bright spots along the way, but the good has not come close to outweighing the very difficult. Today, I live alone in relative isolation, spending nearly all my limited time & energy trying to juggle health needs, extreme financial constraints, access to necessary care, keeping up with daily household chores, & battling depression. Social life, phone calls from friends, sex life, trips to the gym, extra $ for an occasional delight of any type... all virtually non-existent any more. Support from local AIDS organization(s) or the VA more often than not misses the mark for the uncharted territory I'm in now. Too often I have to fight long & hard to obtain specific types of care & support that should be readily available without complication or delay to all people in our culture. Though very weary from too many years of fighting, I haven't given up totally (as yet!); but the outlook seems quite bleak for me.. every-increasing suffering from a host of HIV, medication & aging conditions, little-to-no social support, & eventually dying alone with no one to even bury me or finalize my affairs. As an elder with HIV/AIDS, I try to be grateful for what good I have, yet I oft wonder if it's been worth taking the meds & surviving so long. PWA's who died in the 80's - early 90's may have been the luckier ones. They suffered, yet were spared many yrs. of grief by dying young.
Comment by: JoeP
(New York, NY)
Thu., Jan. 2, 2014 at 4:52 pm EST I agree 100% with you comment regarding those who died young in the 80's or 90's were lucky in a way. On disability for 18 years, I've had it. There have been many ups and downs but the downs far outweigh the ups. Complete ED after an appendectimy in 1992 (I was 31), CMV retinitis in 1994, kidney failure in 2000, I am always telling myself "I'm done". I will never be in a relationship, nor ever really feel happy. 18 prescription pills/day, constant depression, fatigue, and nueropathy. I don't even look forward to anything anymore. The sick thing is a hide my life's gripes fairly well among friends and come across as being well-adjusted, opinionated and cocky, what a laugh.
Comment by: Richard M. Bowman
Fri., Dec. 13, 2013 at 6:31 am EST
As I get older while living with H.I.V., I don't see my quality of life getting worse. If anything, it's better. I work harder at creating & maintaining it. I am more careful, and hopeful. This doesn't mean that I (we) have nothing but sunny days ahead & should party like rock stars. What it means is that we should not give up the fight. Be hopeful, be careful & do as much as you can find it in yourself to do to keep yourself and others as healthy as reasonably possible. DO NOT pass this disease on to anyone else. Ever. Brothers & sisters, live long and prosper. And protect the young ones (even from themselves). Peace out.
Comment by: Tracey K
Tue., Dec. 17, 2013 at 5:17 pm EST this was a wonderful comment. I have been living with Aids for 21 years with the Aids diagnosis in 2002. I love the live long and prosper! And just keep giving it your all! smiles!!
Comment by: Rose Coughlin
Mon., Dec. 2, 2013 at 10:39 am EST
As 2013 rapidly comes to a close, I am grateful to still be healthy and alive. When I tested positive back in June of 1997, I never thought I would live long enough to see my son graduate from high school. I was fortunate to have an awesome support network which included: WIAR (Women's Intercommunity Aids Resource), Cascade Aids Project, Phoenix Rising Foundation just to name a few! Although I never had the pleasure of meeting any of the kind folks at Project Inform in person, there was always a kind and soothing voice on the phone line the nights my fears robbed me of sleep and peace of mind. I would not be here today were it not for the kind people I met through these organizations. I have often told friends how the LGBT community rallied around me and gave me hope, when it seemed like the rest of the world didn't give a damn if I lived or died!! My son will be graduating from University of California at Riverside in June 2014 and God willing, I will be there to celebrate yet another milestone for him as well as me!! I have lost contact with a lot of these fine people since I returned to California from the Pacific Northwest. But I think of them often, pray for happiness and abundance in their lives, and am Grateful as always for the hope they gave me when I thought my life was coming to an end!! All I want for Christmas is continued "Peace of Mind". It is the greatest gift I have ever received and something money will never buy! Love to all~Rosie
Comment by: Tracey K
Tue., Dec. 17, 2013 at 5:19 pm EST Wonderful! Wishing you mucho Peace of Mind for Christmas and long after!
Comment by: David Six
(East Bay, CA)
Wed., Nov. 20, 2013 at 9:05 pm EST
My husband, who is 54, is being diagnosed with AIDS related dementia, after 10 years on HAART. Basically, a big bucket diagnosis that is isn't very well understood or as my loverly Doctor said "you are in uncharted territory now". We aren't really looking forward to being cutting edge again.
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