An excerpt from this editorial was published on the HIV-Age.org website. Here is the full article:
Making meaning in middle age: The challenge of living longer than expected
It is easy to feel stuck at middle age. Looking back can stir regret for missed opportunities; ahead, the prospects of aging and mortality. Even satisfaction with our present lives involves reckoning with the reality that things are not quite what we anticipated. Unless we see the value in relationships with friends and family, work and social involvement, we can sink into stagnation at midlife.
This challenge can be even more profound for people with HIV who never imagined living to age fifty or beyond. Having spent decades caring for themselves and others AIDS has knocked them off their life course. A magnitude of loss has decimated their social networks, removing the very people with whom they expected to grow old. And, subtle adjustments to physical challenges, financial limitations, and changing priorities have further diminished circles of social involvement.1
Stagnation: “What am I doing it for?”
Stagnation was a significant theme in my study of aging with HIV. Hector, age fifty,2 said he “got into t.v.” rather than pursue work opportunities. Jamie, 57, acknowledged he, “doesn’t get out much.” Joe, age 64, spoke of the losses that accompanied aging with HIV. Not only had all of his close friends died of AIDS, but physical challenges, leaving work to care for his health and the financial limitations that followed all coalesced to create what he called, “a shrinking kind of life.”:
“Then, the other question comes into point, what for? Why should I eat properly, exercise, stay active, not just lay back and wait to die, and go without medication and all those other things?”
For Joe the threat of stagnation at middle age had serious implications.
Generativity: “Mature man needs to be needed”3
The antidote to stagnation is generativity. In middle age we can stagnate into self-absorption or we can give our lives meaning by passing on our experience to the next generation. When we are generative we use our strengths creatively to engage with others through teaching, mentoring, volunteering, or leading.
There were examples of generativity throughout the narratives of the men I interviewed. Arthur, age 64, talked about his writing as a way to “leave something behind”, Luis, 51 volunteered at an AIDS service organization in order to “make a difference.” Tim, at 50, described his activism as honoring friends who died of AIDS:
For my friends that are dead… but it’s not for me, it’s for the future as my friends did it for me, I want to do it for them. I want to make the future better for the people, whether they’re related to me or not that follow me.
I met with Joe several times over the eight months of my study and during that period he made significant changes to his life. He continued his rigorous health care regimen. He got into therapy and rejoined a support group for older people living with HIV. He even attended a family reunion and was surprised that rather than feel ostracized for his HIV-status, he felt included and involved. What motivated Joe to emerge from stagnation? He attributed his adaptation to aging with HIV to concern for others and desire to stay engaged:
“You have to care about other people, and try to integrate your life with other people.”
Generativity vs. Stagnation
In adulthood we continue our psychological development through mastering the challenge of generatively vs. stagnation. For Luis the solution was obvious: “I refuse to be stagnated.” Sometimes the decision to be generative involves more subtle choices regarding how and with whom we spend our time. This challenge was evident as Patrick, age 55, expressed his ambivalence about reconstructing a career at middle age:
“There are those things about 55 that make you want to say, oh just relax…But on the other hand, because that was snatched out of my life in my late 30s and throughout my 40s, I’m scrambling to have those experiences that I should have had when I was younger. You know?. . . so I’m conflicted between being 55 and going, “Well, you’re 55, you know, it’s hard to get out of bed, just relax! Enjoy your life, you know? Don’t . . . don’t work so hard.” And then this other part that’s still hungry.”
Generativity has additional psychological benefits. Generative activities can help people living with HIV rebuild social relationships, reclaim goals relinquished to HIV/AIDS, and remind middle aged and older people of what they have to offer.
Here are a few strategies for generativity that emerged from my study of aging with HIV4:
Teach a class or workshop
Lead a social group
Tutor a child
Provide companionship to a homebound person
Become politically active
Be an HIV peer educator
Serve on a community advisory board
Join a chorus
Create an inter-generational art project
Mentor gay teens
Join a professional organization
Start a blog
Write an editorial on aging with HIV
It’s never too late to pursue a goal, find new interests or impact someone’s life in a positive way. You have a great deal to offer the world, but you are of no service to anyone, including yourself, if you don’t put yourself out there.
Masten, J.E. (2014) A Shrinking Kind of Life: Gay Men’s Experience of Aging with HIV, Journal of Gerontological Social Work. 58(4):319-37.
All names changed
Erikson, E. H. (1963). Childhood and society. New York, NY: W.W. Norton and Company.
Excerpt from: Masten, J.E. (2011) Aging with HIV: A Gay Man’s Guide. Oxford University Press: New York.
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.
I will be speaking at a conference sponsored by ACRIA on Friday April 7th in Manhattan — The End of AIDS: Implications for Care and Treatment of an Aging Population. Click the link to learn more about this event.
HIV and Aging Group
Living longer than you ever expected offers new hope and possibilities, yet growing older with HIV also comes with unique challenges. This short term working group is designed to help gay men over age forty adapt to the changes that accompany aging with HIV. Through group discussion, exercises and mutual aid you will reassess where you are in life and reevaluate your goals for the future.
Aging with HIV is new territory. Get support from other gay men to help you define for yourself what optimal aging with HIV means to you.
- 12 week group beginning spring 2014
- Date/Time to be determined
- 6-8 participants
- $50 per 90 minute session
- Psychotherapist led/ Confidential
- Financial District Manhattan location
For a free consultation call, please don’t hesitate to call.
The AHA Project website is up and running. It’s still in development, so please share your feedback and referrals.
Changes to the site are underway. In the coming weeks this space will launch the AHA Project, a program to empower people who are aging with HIV. I apologize for any inconvenience as I develop the site.
The night of the SCOTUS rulings on DOMA and Prop 8, my husband and I celebrated with dinner at Brooklyn Fish Camp, the restaurant we stumbled giddily into after filing for domestic partnership in 2007. (We subsequently married in San Francisco during the window period of 2008.) Announcing our federally married bliss we struck up a conversation with other diners seated at the bar. As a straight couple quietly exited our waitress told us that they had paid our bill. We caught them and had a nearly wordless exchange, the two of us trying to express our gratitude while she with tears in her eyes conveyed her deep understanding of the day’s significance. Stunned by their generosity we neglected to ask their names. For two middle-aged gay men so accustomed to defending the legitimacy of our love, the evening confirmed that we will need time to adapt to the realities of acceptance.
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.