For People With HIV, Self-Care Can Change Your Health -- and Your Life
"How are you?" is a question often asked rhetorically. But really -- how do you feel? Happy? Sad? Angry?
Over the course of a day, you might feel all of these. Looking back at the arc of a week, you might have the overall sense of things going OK, things going poorly or things hitting their stride and rockin'!
If you feel you're basically happy or at least doing OK, that's helping your immune system. Stress takes a serious toll and has been found to be associated with lower CD4 counts, higher viral loads and disease progression. If you're seeing dark clouds and having trouble dealing with things, you've got stress. It's one thing to become angry or depressed from false news on the "latest cure," but another when you just can't seem to feel good about life. Our communities have lot of traumatic memory to deal with. Adding in guilty about feeling sad or angry or depressed doesn't help.
The good news is that many ways exist to improve your outlook, and the data support such self-empowerment. Finding what works best for you -- and finding the people around you to create that support -- is key.
People use an array of complementary and alternative medicine (CAM) approaches, from vitamins and herbs to massage, meditation, acupuncture, prayer and spirituality. Psychological and social supports have been demonstrated to offer benefits since the early days of the pandemic. Regardless of the method used, finding which works best for your sense of well-being could benefit both your immune and endocrine (hormones) functions.
Social Support Groups
Over the years, many support groups have developed that provide a forum for people to share experiences, deal with grief and address problems with care and other issues. Such groups often have their own character, and finding the right group may sometimes require trying out a few. But the benefits can be powerful, including helping people improve their treatment adherence.
Religion and Spirituality
Many people have religious or spiritual traditions that provide opportunities for making them happier. A range of activities, including prayer, meditation, church services and community activities, are a powerful part of many HIV-positive people's lives around the world.
Spirituality or religious belief have been correlated with better quality of life, optimism, social support systems and stress management. A study in the United Kingdom underscored the ways in which prayer and meditation be utilized by people living with HIV: "(i) creating a dialogue with an absent counselor, (ii) constructing a compassionate 'life scheme,' (iii) interrupting rumination, (iv) establishing mindfulness, (v) promoting positive thinking and (vi) getting results.
In another study, HIV-positive people with higher levels of religious faith and spirituality were found to be more optimistic, drink less alcohol, and have greater self-esteem and self-satisfaction, though it was not clear if their spiritual or religious practices helped to instill these traits or the study participants came to these practices with these traits already in hand. Relatedly, a longitudinal study following 177 people since 1997 found that "spiritual coping strategies" such as overcoming guilt, gaining a sense of empowerment and spiritual gratitude predicted improvements in survival with HIV over a 17-year period.
This relationship goes right down to the cellular level. A study among African-American women with HIV examined associations between "existential well being" -- how you feel about yourself -- "spiritual well being" and CD4 counts, and found a positive correlation between them. Indeed, an earlier study found a faster CD4 decline among HIV-positive gay men who felt, essentially, that they "deserved" their fate -- a cautionary tale as religion can also be used to promote guilt.
Meditation and Yoga
While meditation and yoga tend to appeal more to secular people, people of faith often embrace these practices. There are few studies on their benefits for people with HIV, and some have poor methodological quality. However, it has been found that something as simple as repeating a mantram (a word or phrase you focus your attention on, such as "om") can be beneficial. Managing anger can be tough, but one small study found the use of a mantram by HIV-positive people to offer sustained coping benefits for 22 weeks after an initial five weeks of training sessions. Another small study found benefits from the use of yogic breathing techniques in day-to-day living. These approaches require some time and commitment; it's a practice.
Smoking crack, while a potentially serious problem, can be managed or stopped. Everyone can benefit, as Carl Hart underscored in his memoir, High Price: A Neuroscientist's Journey of Self-Discovery That Challenges Everything You Know About Drugs and Society. A small, two-month study among HIV-positive crack users that involved yoga and meditation training found only modest quality of life benefits. However, participants found the program acceptable and attendance was high. Could that attendance have been sustained over a longer period ? Would the people who stuck with it longer improve more as they started to create new habits? These remain questions for future research -- or your own "n-of-1" study.
A more structured approach was used to provide techniques and practices for people at an inner city methadone clinic. "Spirituality-focused interventions" were found to benefit people's motivation to manage addiction and reduce HIV-risk behaviors.
Getting Uplifted ... and Not Being Beaten Down
Like anything, each of these approaches may have some downsides. The wrong therapist can keep you hooked on visits yet offer little appreciable benefit. A support group may dwell on negativity. Religious organizations may hold views that treat queers, women and transgendered people horribly and consequently leave you feeling worse with every visit. Knowing when a relationship is toxic is crucial to creating a better psychological situation.
Indeed, as reported here in the past, the source of your troubles may be a partner. Women confront an array of challenges when faced with intimate personal violence. Getting out of toxic relationships presents big challenges. Forming new and different relationships is never easy. And, sometimes, we just get used to feeling bad.
When you're ready, know this: Changing that landscape can be done. You can create a sense of empowerment around how you feel that can make life better. Only you can live your life!
George M. Carter is administrator for the New York Buyers' Club (NYBC) and founder/director of the Foundation for Integrative AIDS Research (FIAR). He has been undertaking systematic reviews and meta-analyses of various questions around integrative medicine and HIV with a team at the Mount Sinai School of Medicine.