Preparing for the Aging HIV Epidemic
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
Stay Connected
The final post in December’s Self Care series is on staying connected.
The research demonstrates that having a rich social support network is integral to optimal aging with HIV. Having friends and family helps one to cope with some of the challenges of aging, and of living with HIV. The presence (or absence) of social support affects emotional and physical health. It is not merely the number of friends that matter, but how reliable they are in a variety of ways, and your satisfaction with these supports that matters.
But, many gay men have lost their entire friendship networks to the AIDS epidemic. Add to this the normal losses that occur with aging and we see that just as people need more support from friends and family to deal with the challenges of aging with HIV, they have fewer people in their life to rely upon.
The challenge at this stage of life is to maintain, reconnect, and rebuild social networks. There are many obstacles to rebuilding social networks. You must know yourself, what you like in a friend, and what you need in a friend (which are not always the same.) You also have to be willing to take a risk and even to experience the potential for more losses. A difficult challenge for people who have lost many friends in the past.
I’ve pulled a few suggestions on rebuilding social networks from Aging with HIV: A Gay Man’s Guide:
Renew old acquaintances. Contact friends from your past or deepen your involvement with extended family.
Seek out people with whom you have things in common. Join an organization. Many of the men I spoke with are in HIV or gay men’s support groups. But the options are as broad as your interests. Are you into doll collecting? Environmental issues? Chess? The Avengers? Macrobiotic cooking? Salsa dancing? There is a club for you. Look at your local gay community organization, AIDS service agency, newspaper, or on the web to find a group that fits your needs.
Talk to a stranger. Strike up a conversation with someone you see at the supermarket, in the building where you live, or the restaurant on the corner. If you don’t know what to say, ask a question. People love to talk about themselves.
Diversify your networks. Your friends should include people from different backgrounds. The wider and more varied your network, the greater your ability to manage what life throws at you. There may be straight, younger, or HIV-negative people in your life who would welcome the opportunity to develop a closer bond.
Don’t wait for people to contact you. If you want to talk to someone, pick up the phone (and leave a message at the beep). Every day. I don’t know anyone who can read minds. No one will know that you need help if you don’t ask for it.
Consider professional supports. You may feel more comfortable reaching out to a psychotherapist, pastoral counselor, or social worker than a friend when you are depressed or anxious.
Get a pet. Pets are great companions. And when you’re walking the dog, who knows who you might meet?
Pursue (or maintain) a romantic relationship. A stable marriage at age 50 is one of the predictors of healthy aging at age 75.
Use the Internet to cast a wider net. The Internet is not a replacement for human contact, but it can be an effective tool to rebuild your social network. Several aging organizations serving the lesbian, gay, bisexual, and transgender (LGBT) and HIV communities have resources on the web. Don’t be afraid to join Facebook, Twitter, or LinkedIn. They are great tools to stay in touch with people of all ages.
Form a reading group. At the end of the book I outline a strategy to use this book in a group setting. But you can form a reading group on any subject that interests you. Start advertising by word of mouth and then consider where you can post a flier or put in an ad to best reach like-minded people, such as your office or a local bookstore.
Just as a garden needs constant tending before your new plant can take root, you must nurture your relationships for them to mature. Keep showing up. Stay in regular contact with your friends. Time can weaken the bonds of friendship. Find ways to stay in touch, such as the telephone or Internet. Similarly, don’t allow arguments or miscommunication to jeopardize a good friendship. Try to work out your disagreements by talking to each other, or ask a friend or professional counselor to help you mediate the problem. Remember, maintaining friendships is as important as forming them.
Staying Fit
The third post in the December Self-Care series is about staying fit. For me, the challenge of exercising is getting started. I never want to exercise, but I always feel better after. My strategy to compensate for my inertia is to include some form of physical activity into my weekly routine, that way I don’t have to think about it, I just do it.
The benefits of exercise are multi-fold. A balance of aerobic exercise, strength training, and stretching helps cardiovascular health while maintaining muscle mass, balance, and flexibility. Regular exercise is not only an integral part of physical health for people aging with HIV, but exercise can also help you reduce stress, manage anger, and improve your mood. In addition, there is evidence that regular physical exercise can actually forestall the onset of non-HIV-related dementia.
Calisthenics, rapid walking, jogging, dancing, and hiking are aerobic activities. Strength training––using weights or other forms of resistance––is increasingly found to be important for building muscle mass lost with aging. Stretching is an important part of any exercise routine, and it is especially important to increase flexibility as we age. Yoga is an ancient form of exercise involving the mastery of postures that increase flexibility and strength. I recently heard one yoga instructor refer to spinal flexibility as, “the fountain of youth.”
Your exercise routine should include aerobics, strength training and stretching. Exercise does not need to be strenuous. Start slow with achievable goals and respect your limits. You may want to consider getting started with a fitness professional. Before starting an exercise program be sure to discuss it with your doctor.
Next post: Staying Connected
A Good Night’s Sleep
As we’ve been discussing on this blog , aging with HIV involves adapting to a great deal of change. One aspect of optimal aging with HIV is re-evaluating your coping strategies, to make sure they are meeting your changing needs.
This month we will be discussing Self Care. December can be a stressful month and you may want to make sure that you are doing everything you can to take the best care of yourself that you can.
Developing healthy sleep habits is an integral part of self care.
There are several things in life that could impact your sleep. Changes in medication, physical changes that accompany aging, stress, and environmental changes can all affect your ability to get a good night’s rest. The following are some recommendations for getting a good night’s sleep taken from Aging with HIV: A Gay Man’s Guide.
Many people’s sleep habits interfere with getting a good night’s sleep. For example, eating or drinking in bed, reading/playing cards in bed, and falling asleep with the TV on for background noise are just a few. These practices train your body to be awake in bed. If you are having sleep problems, try retraining yourself: go to sleep and get up at the same time every day, remove the TV from the bedroom, make your bedroom quiet and dark (use blackout shades if necessary), do not read in bed, and do not eat or drink in bed. The bed should be only for sleep (and sex). Establish a prebedtime ritual, such as turning off the TV and computer at least 30–60 minutes before bedtime, changing out of your day clothes, and flossing and brushing your teeth, to prepare your body for sleep. When you feel tired, go to bed. If you cannot sleep after 20 minutes, get up and leave the bedroom, but don’t turn on the TV or computer. Wait until you feel tired and try again. If you continue to have trouble sleeping, you should bring it up with your doctor.
Next post: Eating Well.
Self Care
Someone in AA recovery recently told me that alcoholism is a three-fold disease, “Thanksgiving, Christmas, and New Year’s.” The risk at this time of year is to turn to alcohol as a way to cope with stress. But, the holidays are not only challenging for alcoholics. They are wrapped up with intense meaning for many of us, and, it is difficult not to feel pressured at this time of year. The holidays can also stir up feelings of grief, sadness, and loneliness, and these feelings can be compounded when it seems that everyone else is having fun but you. And, moods can darken when the weather starts getting colder, and the days become shorter.
But, there are things we can do to take care of ourselves at this time of year. That is why for the month of December I will be dedicating my blogs to the subject of Self Care.
Self care can be both simple and difficult. A few activities may mean making only small adjustments to your daily routine. However, maintaining a regimen of self care can also feel like work. People can be surprised at the discipline it takes to take care of oneself.
Please feel free to add your thoughts at any time. I hope that this will spark a discussion about self care and aging with HIV.
Next post: Healthy Sleep Habits
World AIDS Day
We are at the end of the third decade of the World AIDS epidemic. The disease has impacted the lives of people throughout the globe and reshaped societies. Today the epidemic has a very different meaning in the developed world than twenty-nine years ago. Because of advances in the treatment of HIV disease, Aging is now THE issue in the United States. Not only are people living longer than expected, but by 2015 the majority of people living with HIV in the US will be over fifty years old. The aging of HIV means that we need to develop new policies and treatments for the disease. People living with HIV must adapt to the challenges of growing older and develop new mindset of Optimal aging with HIV. To read my World AIDS day article for Edge magazine follow this link – Edge magazine.
SAGE conference update
Last Saturday Dr. Stephen Karpiak and I spoke at the SAGE National Constituents Conference, The Future of Aging is in Our Hands! Our workshop, “Aging with HIV: The Complications for Success,” was well attended by a mix of people, including gay men living with HIV, activists, and social workers from the LGBT community.
Dr. Karpiak presented the background statistics, using graphs compiled from CDC and other data, which clearly and dramatically demonstrated the magnitude of the issue. People over fifty make up a large and growing segment of those living with HIV. He also presented the findings from the ROAH study from ACRIA on HIV Over Fifty. The data gives a picture into the psycho-social issues faced by this group. Particularly striking to me was the multiple co-morbid conditions (issues including depression, physical illness, financial limitations, lack of social support) that impact the lives of people living with HIV over age fifty.
Dr. Karpiak shared his evaluation about the workshop with me: “It is always reinforcing to see research data supported by the observations of the clinician. This was clearly the case at our dual presentation at the SAGE Meetings this past weekend. ACRIA’s research on the older adult with HIV (ROAH) describes a population who are long-term survivors in the HIV epidemic. They have had to develop different coping strategies as they shifted from the expected short life following an HIV/AIDS diagnoses to a long life span due to effective drug treatment. And now they face another challenge. At age 50-60 they are developing multiple age-related disorders that would typically be seen in 75+ year old adults. We know that successful aging is achieved when the person has support from their social networks – caregiving. But the older person with HIV, like the older lgbt person, is largely without traditional family networks from which most caregivers are derived. They cannot fight this next challenge alone. How will our community respond to this need? Will they respond ?”
For my part, I focused on what we know about aging from the gerontological literature and the unique concerns I identified in my research on HIV over fifty. People over age fifty living with HIV face many of the same challenges of aging as those who are HIV negative. However, HIV complicates the picture in a number of ways, including, but certainly not limited to, symptom ambiguity – the difficulty determining whether an ailment is age or AIDS-related. After presenting the challenges faced by people aging with HIV, I presented some of the solutions found in the gerontological literature to help people optimize their experience of aging.
The workshop included a lengthy group discussion in which audiences members shared their experiences, challenges, and what works for them. It was exactly the type of conversation that I advocate for in Aging with HIV: A Gay Man’s Guide, to empower people to define Optimal aging with HIV for themselves.
Public Policy on Aging with HIV
A reader, Loren M., recently completed a course on public policy in Aging with HIV at San Francisco State University, Gerontology program. He has researched the issues around Aging with HIV, and has shared the result of his studies. For a report on Aging with HIV Policy go to my post – Aging with HIV Goes to the White House and read his comment.
Thanks Loren M. for sending that information to us!
The Future of Aging is in Our Hands!
Just a reminder that I will be presenting on Aging with HIV with Dr. Steven Karpiak of ACRIA at the SAGE National Constituent Conference this Saturday, November 13th. I’m glad to be a part of this hands-on conference. It should be an empowering experience.
- Thought-provoking workshops and plenary sessions on a wide range of topics that affect LGBT older adults, such as self-advocacy and empowerment, health and wellness, aging and ageism, and caregiving;
- Renowned speakers from across the LGBT and aging fields;
- Free clinics where you can get advice from experts on the legal, financial, health and financial issues that directly impact your life;
- Special documentary film screenings;
- Opportunities to network with colleagues from across the country;
- And much, much more!
The Lazurus Effect
I was recently asked by a reader of Aging with HIV: A Gay Man’s Guide to comment on the term the Lazarus Syndrome. This man, a gay man living with HIV in middle age himself, wondered why I don’t refer to the term in my book and why it seems to be out of favor in the field. I thought it was a very interesting question, and I thought I would share my response with you.
You raise a very interesting point. I, too, remember when the term, “Lazarus syndrome” was used by researchers, clinicians, people living with HIV, and the media. With the introduction of protease inhibitors some people with HIV found a new lease on life. (I say, “some” because I knew many people for whom these early advances were not helpful. There continued, and continue, to be deaths to AIDS and many experienced debilitating illnesses and side effects even with the advent of HAART.) But, people were surviving, and for many this felt, as you put it, “miraculous.”
I think the term, Lazarus syndrome, emerged to describe the experience of people who, spared from imminent death, had to concern themselves with the challenges of living with HIV. In retrospect, I see how using that term helped people put a name to the feeling that they had lived longer than expected, and, having identified themselves as survivors, could then set out to “live” with HIV.
I am not sure, however, what the “syndrome” was that the term was meant to describe. Doctors use the term “syndrome” to identify a collection of symptoms that occur together. I don’t believe a syndrome was ever identified in people living with HIV who had survived longer than expected. Perhaps, that is why the term has fallen out of favor. I have also read the term Lazurus Effect, which seems to me more accurate.
Instead of one “syndrome” we see several dynamics impacting people living with HIV. Concerns related to managing chronic illness, stigma, depression, financial concerns, survivor guilt, etc. have all been studied, but, as far as I know, there is not one clinical picture of people living with HIV.
And, now, a whole new set of issues are arising as people are facing the unanticipated challenges of aging with HIV – which is why I wrote the book.
So, my long winded response to your question is, yes, the Lazarus effect, is still a concern. However, in my opinion, the longer people survive with HIV and the virus evolves into a chronic illness, the term will only describe a part of an increasing complex picture of what it means to live with HIV.
Do you think the “Lazarus Effect” accurately describes the experience of living with HIV today?
AHA Project 