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.
Today the United States Supreme Court struck down the Defense of Marriage Act (DOMA) paving the way for gay marriage. I am exhilarated and so deeply moved that it will take me some time to process the significance of this event. I would like to write a few immediate thoughts as I take in the ramifications of this day.
On a national level the ruling raises the concerns of LGBT people to their rightful place in the discourse on human rights. And, on a very personal level, it means that my marriage is now federally recognized.
Yet, there is so much more.
I am deeply grateful to Edith Windsor. In fighting for her rights as a married woman, she took up a cause that will have implications for all of us. I applaud all the activists who participated in this case and who are fighting for LGBT rights in so many other battles. There are too many people who continue to experience the pain of abuse and oppression.
When I heard the news my mind went immediately to my lover who died of AIDS in 1991. He participated in changing his world for the better and I think he would have been so proud to know how far we have come. There is a long history of activism in our community that has led to this event, and I want to honor those who came before and are not here to reap the rewards.
In my psychotherapy practice I often have to help people through feelings of sadness that accompany a joyful event. They wonder why they should be crying when they are so happy. I let them know that it is normal to feel grief when we get what we want. We are encountering the feelings of loss that have been kept at bay when we couldn’t have what we were longing for.
As with any change, including changes for the better, there will be a period of adjustment. For many of us this ruling will create shifts in how we relate to ourselves and others. We must reexamine the walls that we created to protect ourselves from the homophobia of our pasts. We might find that defenses that were necessary at the time may no longer serve us. As someone I spoke with today said so eloquently, “I need to learn how to be accepted.”
I feel such love for my husband. I have to wonder whether the lack of recognition of our marriage might have affected the quality of our relationship and how this judgment could offer us an opportunity to deepen the commitment we have to one another.
I’m glad to be alive on this momentous day, to learn and grow. Lets keep the conversation going and help each other adapt to the changes ahead.
When a woman with HIV realizes that she’s lived longer than she ever expected and begins to rebuild her life, that’s an aha moment.
When a doctor and patient sort through the complexities of HIV, the medications used to treat the virus, and the realities of aging to identify an effective treatment, that’s an aha moment.
When a group of gay men acknowledge how the AIDS epidemic has impacted every aspect of their lives and start the healing process together, that’s an aha moment.
When a politician recognizes that AIDS is not over and funds programing to meet the challenges of HIV and aging, that’s an aha moment.
In the past two years since the release of Aging with HIV I’ve met many amazing men and women who are living with HIV longer than they ever expected. Throughout the country we’ve created conversations that have expanded our understanding of aging with HIV. Together we’ve exchanged information, shared experiences, processed feelings and built communities. It’s been a real learning experience filled with aha moments.
That’s why I’ve decided to start the AHA Project (Action for HIV and Aging) to facilitate discussions that empower people to define for themselves what it means to optimally age with HIV.
In the coming weeks agingwithhiv.wordpress.com will become ahaproject.org. I appreciate your patience as I develop the site to reflect its developing mission.
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.
It has been an exciting year since the publication of Aging with HIV: A gay man’s guide. I have met a lot of great people around the country and overseas who are keeping conversations going about the challenges of aging and how people living with HIV can define optimal aging for themselves.
There have been many developments in the field: SAGE developed a policy paper on Aging with HIV; There was an historic White House meeting on HIV and aging; Interesting findings were discussed at the Baltimore Conference on HIV and Aging, the SAGE constituent conference and the 2nd Annual Conference on HIV and Aging in Austin; The HIV and Aging Group built community on Facebook; The National LGBT Aging Resource Center was created; Clinical Guidelines for Medical Management of HIV and Aging were released; and Caring and Aging with Pride published its report on LGBT Aging in the United States.
Aging with HIV was discussed in print and on the web: I talked with Mark S. King on MyFabulousDisease.com; The Philadelphia Gay News; The New York Times; Edge Magazine; And, the book was reviewed in The Bay Area Reporter, Lambda Literary Review, and The Gerontologist. And, I’m looking forward to the publication of an interview with Neal Broverman in next month’s Advocate.
It’s been quite a year!
I am looking forward to keeping you posted on new developments in the field. Aging with HIV is an expanding field. I am hoping that readers continue to share insights, information, and personal stories with me, so that I can pass them on to the community and keep the conversation going in 2012.
Caring and Aging with Pride, the first national federally-funded project to examine LGBT aging and health, recently released a report of its findings. The study included a national community-based survey of over 2,500 LGBT older adults from diverse walks of life. This research provides a “historic new window into the health and lives of LGBT elders in America.”
The report is comprehensive and examines several areas of older people’s lives, including: Physical health, mental health, healthcare access, health behaviors, services/programs, HIV disease, and caregiving. From their intensive research this group of recognized scholars conclude that LGBT older adults are a “resilient yet at risk population.”
Some key findings illustrate the complex reality of LGBT aging in America. In the 88-page report a few statistics were particularly disturbing to me. Respondents reported high rates of loneliness, disability and depression, and fewer social supports than found in the general, non-LGBT aging population. Most had been victimized at some point in their lives, and many had been victimized multiple times, because of their perceived sexual orientation or gender identity. The participants reported significant barriers to accessing health care, including discrimination, receiving inferior care, and inadequate care from providers who they can not “come out” to or who are insensitive to LGBT issues.
Yet, there were findings in the report that point out the strengths of LGBT older adults. Many were involved in their communities and engaged in wellness, as well as physical activities. They were contributing members of their communities and have distinct networks of support consisting of peers, partners and friends. And, a large majority feel positive about belonging to the LGBT community.
The report concludes with a strong call to action that addresses steps we can all take in the areas of policy, services, education, and research.
I am excited and encouraged by the breadth and quality of this research. This project represents a significant step in addressing the needs of Lesbian, Gay, Bisexual, and Transgender older adults. The findings will help researchers, policy makers and service providers, like myself, do our jobs more effectively.
I encourage you to go to the Caring and Aging with Pride website to read the full report or to view the brief Executive Summary.
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.
Last week the American Academy of HIV Medicine, the American Geriatrics Society and the AIDS Community Research Initiative of America (ACRIA) published recommended treatment strategies for clinicians managing older patients with HIV. This is a major step in the medical treatment of HIV recognizing the unique and complex medical issues faced by this growing population. It is the first time best practice guidance has ever been developed for HIV practitioners and other health care providers who treat diagnose and refer older patients with HIV disease.
The report contains specific guides provided for Diabetes, Cancer, Hypertension, HepC etc. as well as HIV testing and Sexual Health and more. While it is directed at practitioners, people living with HIV may want to familiarize yourselves with the recommendations and discuss their relevance to your care. The full report is 76 pages, but an executive summary outlines the treatment recommendations in each area.
To view the overview, executive summary, or full report go to the American Academy of HIV Medicine webpage.
Do you remember, remembering? When we used to take a moment of silence at gay pride? When every meeting we attended on HIV began with an acknowledgement of those that were no longer with us? When every World AIDS Day we talked about AIDS, and the overwhelming impact it has had on all of our lives?
Did you take that time today? I’m not sure if I would have if I weren’t writing this blog.
But, as soon as I stop what I am doing to reflect on World AIDS Day. In less time than a blink I am flooded with memories. I remember Roger who died in 1991, five years before Protease Inhibitors would reshape for so many what it meant to live with HIV. He took so many medications, only in the end to stop everything and attempt to fight his illness with the power of love. I remember Michael who died the following year. I was 24 and I think he was a year or two older. Just a child. But, I didn’t know that at the time.
I remember so many lovers and friends who are no longer here. So many strangers on the street, whose faces I will never see again. A generation wiped out by the epidemic.
And, still, I remind myself that it is not over. That people all over the world are getting exposed, becoming ill and dying from HIV-related illnesses. That so many friends who have survived AIDS, continue to deal with heart disease, cancer, diabetes, lipodystrophy, cognitive challenges, and other HIV-related (or not HIV-related?) illnesses.
I consider the new challenges that accompany living longer than expected – Rebuilding lost careers, developing new social circles, managing survivor guilt, living through loss, and adapting to aging – to name just a few.
I reflect on the impact the epidemic has had on all of our lives. The losses, and the strategies we developed to cope. The opportunities that we could not avail ourselves of and the strengths we acquired fighting (literally and figuratively) to care for each other. And, I recognize the scars that I acquired from surviving those battles – how they are now a part of my constitution, just like my family and my sexuality shaped my identity growing up.
People sometimes ask me, “Why should I remember those things? They are just going to make me sad.” There are so many responses to that question. First, I say, “If just thinking about the past makes you sad, then you were probably sad already.”
Avoidance is a problematic coping strategy. When we don’t deal with our feelings they tend to get expressed in other ways. Just like a dammed river creates flooding in other low lying areas, unacknowledged feelings can leak out and create problems in other areas of our lives. When we know what we are feeling, we can choose what we want to do with those feelings.
I have seen so many reactions to grief: sadness, fear, excitement, guilt, anger. In my work I help people to have all their feelings. I’ve found that feelings tend to come and go. Happiness, sadness, deeply felt, still passes. Resilience means acknowledging losses without getting mired in grief.
Rituals help us to make our feelings tangible. Lighting a candle, visiting a significant place, talking with friends, writing a blog are gestures that offer us the opportunity to mobilize our feelings into actions that honor ourselves and those that we remember.
Reminiscing can be healing, especially as we age. Our memories connect us to the past, reminding us of who and what were once important to us. We can draw strength from people and experiences from our past, but only if we can allow ourselves to remember them. Reminiscing offers an opportunity to redefine ourselves in the present. Our recollections contain tools that we can use to manage upcoming challenges.
The men I interviewed for Aging with HIV talked about how living with HIV went from being a trauma to become “a part of our lives.” The landscape of AIDS has changed for all of us, and we can each benefit from taking the time to reflect this World AIDS Day.