HIV-Positive Living With Purpose

No one raised their hand. Their faces conveyed bewilderment, as if the idea had never occurred to them. I was sitting in a circle of men living with HIV, a weekly group I lead where we delve into both the complications and skills inherent with living with the virus. I had just asked them to share what gives them purpose and passion and everyone seemed at a loss.

While such hesitation is probably a common response, it is an especially important question for anyone living with HIV. Having a sense of purpose is correlated with lower stress, better health outcomes and an improved overall sense of well-being. Maintaining a sense of personal control -- even in the face of difficult situations -- improves health outcomes.

That evening in group, after a long period of silence, someone stated that his dog gave him comfort. Another said that listening to music relieved his stress. While such resources are essential for health (I am a dog owner and music lover), they don't fully elicit the energized state of living with purpose. Most of the men in that circle reported spending the greater part of their life under the shadow of HIV. They had been preoccupied with maintaining their health -- sometimes a life and death struggle -- and any broader sense of purpose got lost in the daily struggle. Most had given up careers, few had planned financially for a long life, and many had withdrawn socially, creating loneliness and isolation. Any optimism, sense of personal efficacy or purpose that anchors most people's lives had been difficult to sustain.

A critical objective for the group is helping participants reimagine their lives with HIV. Such engagement allows individuals to focus their creativity and individuality onto activities and organizations that resonate with them, thereby breaking the isolation and powerlessness they frequently experience.

Group participation is not the only way this can be explored. Interactions with health care providers, no matter how brief, can provide a corrective model that helps patients explore possibilities. Patient styles vary: some have a somewhat passive approach to managing their lives while others need a better sense of control. I find it useful to help them identify any beliefs about themselves that limit their sense of purpose (and which are often out of conscious awareness). For example, many of the men in the group experienced an earlier era in HIV medicine when it was good advice to think "short term" and "get one's affairs in order." This often resonated with core beliefs already firmly in place such as, "I am not safe," or, "I am all alone." Over time, shame and stigma eroded their sense of efficacy and focus.

6 Tips for Living With Purpose

One or more of the following six points can be easily woven into a conversation in any setting and supports the development of personal empowerment, which, ultimately, promotes emotional and physical health.

  • Do what excites you
    While a portion of people living with HIV may have depressive symptoms that prevent them from truly experiencing pleasure, most are rarely challenged to consciously pursue their passion. Managing one's health requires great expenditure of energy and often leaves few resources for the pursuit of pleasure. Asking the patient what he or she personally finds exciting can be a pathway to discussing healthy habits as well as an opportunity to get a more holistic impression of the patient.
  • Find time for service
    There have been many studies about the health benefits of volunteering and service. The Hindu concept of seva, or selfless service, recognizes this, as do countless traditions around the world. Expending effort on behalf of others expands one's connectedness, a critical issue for persons living with HIV, and rewards one with the satisfaction of assisting someone else while positively impacting one's own health.
  • Differentiate self-care from selfishness
    It is natural to have needs and it is healthy to express them, yet many patients find it difficult to discern self-care (and being worthy of that care) from being selfish. HIV-related stigma and shame can reinforce false beliefs about worthiness, resulting in feelings of guilt when someone acts in his or her own self-interest or asserts a need. I encourage my patients to become familiar with their own undermining self-talk and practice corrective affirmations to help them embrace and express their needs and feelings. Changing this self-talk can be slow and frustrating and requires ongoing support. It is helpful to refer them to a group where they can practice expressing themselves and receiving feedback in a safe setting.
  • Rediscover or develop gifts and talents
    Finding one's creative voice and sharing it with others promotes healing. There is a feeling of happiness in our group when a member begins drawing again or starts singing simply for the joy of it. A powerful creative spirit is released when individuals are encouraged to develop their unique ability to express themselves. Everyone touched by that person experiences a bit of healing. Encourage your patients to proudly express what makes them unique.
  • Discern between planning and worry
    Many people living with HIV spend an extraordinary amount of time worrying. Their focus can be something ambiguous, such as future health outcomes, or very specific and relevant, such as a health concern or access to medication. I have found it useful to point out the difference between worry, which lacks focus and is counterproductive, and goal-directed planning. By understanding this distinction, a solution-focused process can be applied to any given problem. This is a much more empowering experience than the circular reasoning inherent with unfocused worry.
  • Declare yourself
    At the end of a workshop on empowerment that I developed with a colleague, participants are asked to stand in front of the group, make eye contact, and "declare" themselves in a strong, clear voice (for example, "I am ..." a survivor, a strong leader, a proud woman, a healer, etc.). At first, most people cast their eyes downward, their voice falters, and they pronounce their declarations in the form of questions. The group is asked to help by pointing out strengths the individuals might not see about themselves or simply don't believe. If it's not convincing, the group asks the person to repeat it. Finally, when someone's verbal expression connects with his or her purpose and power, a different energy visibly takes hold.

Opportunities abound to help others reframe beliefs or reflect what may not be obvious. As health care providers, we can encourage (and sometimes gently push) our patients to reclaim what may have been lost when they were diagnosed, or what may have never been present. In either case, reclaiming personal power benefits both the individual and the community.