IN THE NOVEMBER+DECEMBER ISSUE, WE ASKED What do you think are the three biggest issues facing long-term survivors of HIV and AIDS?
We received more responses to this question than to any other poll. The open-ended, multiple-choice nature of our question made compilation of responses difficult. Nevertheless, the usual suspects dominated responses: problems with health care, finance, and social issues (among them stigma, shame, isolation, discrimination, addiction, depression, loneliness, survivor’s trauma, and survivor’s guilt). Some also mentioned isolation and discrimination specifically from the gay community. Following are a few of the comments from readers.
The three biggest issues facing long-term survivors of HIV and AIDS? How can anyone figure there are just three issues at the top of a list—it’s a very, very long list, to be honest, and no one at this time is doing anything about it besides discussing it. Quality of life, equality, housing, health care, and compassionate outreach. Continuity of care in LGBT-oriented homes. Early aging, isolation... I could go on for days.
Stigma is tops on my list, for it keeps some from seeking care. Lack of funding. Last, but not least, discrimination.
PTSD from watching friends die. The trauma of our own loneliness. Planning for old age after missing many crucial work years to illness.
Poverty; pain (neurological and osteopathic); mental health (depression, anxiety, and survivor guilt).
Aging process. Loss of contact with friends. Lack of adequately trained health care providers.
Internalized stigma from long ago. Survivor syndrome. Fear of living—I thought I was dying for so long, it became a habit.
Few resources and support for female longtime survivors; scarce post-menopause support; poverty.
Emotional and mental health supportive services, especially peer support, to heal from grief and trauma. Prevention of cancer, heart disease, stroke, and diabetes. Financial help after years of illness-related lost employment and education.
The long-term effects of HIV medications.
Finding and sustaining meaningful long-term relationships.
Dealing with survivor’s guilt—“Why did I live when so many better people died?”
For someone like me who went on LTD [long-term disability] in the early-mid ’90s and having an LTD that only goes to age 65, it is reinventing myself and finding a way to supplement that LTD income once it stops. Having substantial fatigue, my energy is limited and I believe that my mental acuity is somewhat diminished.
Depression and social isolation. Accelerated aging and frailty. Chronic conditions (such as diabetes, cardiovascular disease, and osteoporosis) caused by HIV itself, inflammation, and medication toxicity.
I’ve been positive for 35 years, and I am dealing with a lot of fatigue, neuropathy, and bowel issues, but my blood work looks fine, so my doctor always thinks that the impact cannot be that much.
Being a survivor of anal cancer and HIV (28 years), I have witnessed the inability or the unwillingness to continue life without a rectum and the absence of anal intercourse. I have seen people just giving in to the outcome of the cancer or disease they have, rather than seek treatment. Quality of life is going to be the main issue with a lot of people.
Health-related issues due to long-term use of ARVs (I’ve already had both hips replaced at age 52 from Crixivan and have kidney failure from Truvada—what next?).
My three biggest issues have been side effects of the HIV medications causing life-threatening liver and kidney problems, as well as depression related to body-image changes of severe lipodystrophy (and out-of-pocket costs of $14,000 for plastic surgery to slightly mitigate the buffalo hump and turkey-waddle fat deposits), coupled with erectile dysfunction issues and isolation from the gay community at large (all those “D&D-free, UB2” types). HIV hasn’t been a walk in the park on a sunny day for me—wish I could report differently.
Mental health, after seeing so many close friends and loved ones die en masse and many of the ones left in depression from survivor’s guilt.
It’s very hard to talk about the early days when the “Oh, just take a pill and things will be just fine” mentality is taken by the newly infected.
A feeling of being alone and forgotten. Some deal with it by doing drugs and drinking too much and other unhealthy activities, to try to block what haunts you when you’re left with only your memories.
A few single answers (some mentioned by several readers): Unresolved lipodystrophy. No work and no disability. Loneliness—a lot of our peers are gone. Pill fatigue. Staying relevant in the fight against HIV. Finding joy and happiness again.