The latest edition of the journal, Achieve, is devoted to HIV over fifty. I contributed on stigma entitled: Managing the Triple Threat: Strategies for Older Gay Men with HIV. Here is the link to the publications page where you can download volume 7, number 3.
The Journal of Gerontological Social Work is publishing an article I’ve written entitled “A Shrinking Kind of Life: Gay Men’s Experience of Aging with HIV.”
Here is the abstract:
More people are living with HIV into midlife and older age. Although increased longevity brings new hope, it also raises unanticipated challenges—especially for gay men who never thought they would live into middle and older age. Middle-aged and older people are more likely to face multiple comorbidities, yet many lack the necessary supports to help them adapt to the challenges of aging with HIV. This article presents the findings of a qualitative study developed to explore gay men’s experience of aging with HIV. Multiple in-depth exploratory interviews were conducted with 15 gay-identified men living with HIV/AIDS over an 18-month period. A systematic strategy data analysis consistent with grounded theory revealed a pattern of subtle adjustments to living with HIV that resulted in diminishing circles of social support and social involvement. This dynamic is referred to as “a shrinking kind of life,” an in-vivo code built from the participant’s own words. Four themes from the research (physical challenges, a magnitude of loss, internal changes, & stigma) are discussed. Conclusions include recommendations for future research and implications for practice in the field. Practitioners knowledgeable of the factors that impact their social involvement can empower gay men through individual and group interventions to confront a shrinking kind of life and define for themselves what it means to optimally age with HIV.
Taylor and Francis has given me 50 free downloads. Just click on the link above to access the full article.
In a recent article for the American Society on Aging, Nathan Linsk, considers the issues faced by older adults as the significant challenges for the fourth decade of HIV. The article discusses the physical and emotional challenges long term survivors face as they live longer than ever expected. Linsk summarizes recent research developments in the field, offers links to articles, and lists resources available.
To read the article go the the ASA website.
In today’s New York Times Austin Considine writes about gay marriage and the bittersweet victory it represents for men in midlife who have lost loved ones to the AIDS epidemic. Considine interviewed several gay men who share their feelings about this previously unimaginable day in New York history. There is happiness and rejoicing, but also sadness and grief. I talked with Considine about my experience and how even successes can trigger old feelings of loss. I think that many gay men will relate to these men and find support in their stories.
The National Resource Center on LGBT aging has updated its HIV and Aging pages. Click here for a link to my article and browse the site for other articles and resources throughout the country.
On Memorial Day, the New York Times published an article by Dr. Lawrence Altman remembering the early AIDS epidemic of 30 years ago. His article poignantly reminds us of those desperate days when there was little scientific knowledge, and a great deal of misinformation, fear, and stigma. He memorializes those who died in the early years, for whom “the wait for effective treatments — a decade or so after the first reports of the disease — was far too long.” His report acknowledges how far we have come, yet does not deny the continued gaps in our knowledge and lack of progress made in developing an AIDS vaccine.
For me the timing of the publication of this article resonates strongly. The AIDS epidemic of the 80’s and early 90’s was a war that needs to be memorialized. A generation was lost to the disease and those that remain are scarred emotionally by the battle.
While it raises painful memories, Altman’s article offers us an opportunity to remind ourselves of what we have lived through, and to remember the friends that we have lost. I believe that the ability to reminisce is an integral part of healthy aging. This kind of life review allows us to learn from the past, not live in it, to draw on past experiences for life lessons and guidance to help us cope with challenges in the present. I am grateful to Dr. Altman for his work in the field of AIDS and for sharing his experience.
In her blog post, Nurse Practitioner Bethseba Johnson discusses her path from work with the elderly to people living with HIV. I enjoyed reading her story and related to some of her experiences.
In the early nineties I went back to school to get my Masters in Social Work. Before graduate school I had worked at the New York City Department of Health, Office of Gay and Lesbian Health Concerns and the New York City AIDS Hotline and had been an HIV educator and activist. I had also just lost my life-partner to AIDS and had decided to dedicate my career to social work and HIV.
So, one day while at my job at the AIDS Hotline, I received a call from Hunter College to tell me that in the coming fall I would be Interning at SAGE (formerly, Senior Action in a Gay Environment.) “Old people!” I thought, “I don’t want to work with the elderly!” I had a million reasons why this would not be a good placement for me: I was an activist, work with the aged is boring. I was a very young man, myself and couldn’t relate to older people. I wanted to do HIV work. Looking back, I know now that I was afraid. I was intimidated by the idea of working with older people, and thought I had little to offer them.
I look back on that year with a deep sense of gratitude – to my supervisor, Arlene Kochman, to the staff and volunteers at the agency, and to the clients I worked with. I think I got back far more than I gave. The work was far from boring. I was constantly busy – doing home visits, helping people get entitlements, doing individual counseling, running support groups. I learned so much about aging in general: the physical, emotional and social changes that accompany growing older. And I grew to appreciate the importance of the gay community for that generation of older adults. I was privileged to hear the life stories of gay men and women who were part of the early gay rights movement. I observed their strength and resilience in the face of discrimination and abuse. And, I saw the impact that stigma can have self-esteem and social involvement – a potentially damaging combination for older adults. I received training on end of life care. And, I learned a strengths-based approach to help people make the most of older adulthood.
Because of my background in HIV education, I was assigned several older gay clients who were living with HIV. Eventually, I took over a support group for people living with HIV. Ours was one of a handful of groups for people aged fifty and older. Many men came to the group, because they felt like outsiders in HIV-support groups for younger men, they couldn’t talk about HIV in mixed settings and they wanted to be in a group of their peers. This was before the era of Protease Inhibitors, so much of our time was spent discussing mortality. I continued to run this group for several years after my placement ended. During those years, we lost several members, and the group was a supportive environment (for me, and, I believe, for the members) to deal with the losses we were experiencing inside and outside the group. But, the group wasn’t just about death, it was was about life, and each week people brought in their concerns, challenges, achievements and hopes, and they knew they could talk about whatever they needed, that they wouldn’t be judged and that people would understand. It was through this work that I developed my appreciation for the healing power of group work.
My experience at SAGE was a great foundation to build a career in social work and psychotherapy. And, now that people are living with HIV into midlife and beyond in increasing numbers, I appreciate my early training in the intersection between HIV and aging even more. By 2015 over half the number of people living with HIV in the US will be aged 50 or older, and we will all need to educate ourselves on the realities of aging with HIV.
To read Bethsheba Johnson’s story go to The Body Pro.
Doctors at the University of California, San Francisco (UCSF), appreciate the unique challenges faced by their patients as they age with HIV. That is why the University has received funding to develop and evaluate programs that integrate HIV and geriatric services for HIV/AIDS patients who are 50 and older. Researchers at the San Francisco Department of Public Health and UCSF received a three-year grant to study new models of care and offer best-practice guidelines for treating HIV and aging throughout California.
To find out more about this timely study go to the UCSF website.
Here’s what they say about HAG on their Facebook page: “Affectionately called HAG, the HIV Aging Group discusses all issues related to the senior HIV patient experience.”
If you are a facebook user you can join their discussion. Just go to your fb page, search for HAG and then put in a request to join.
POZ magazine on line listed this video on Aging with HIV as one of the top ten for 2010. The article, posted on May 12th by Willette Francis, includes a video of GMHC Executive Director, Dr. Marjorie Hill, reporting the results of their study, “Growing Older With the Epidemic: Aging and HIV.”
In case you missed the original article and video, here is the link: http://www.poz.com/articles/GHMC_HIV_aging_2296_18404.shtml