HIVisions - Saving the world is risky business: Self-care for HIV/AIDS advocates

By Jan Gabriel Castañeda

The HIV crisis has gone on for four decades, and for four decades the world has struggled against it. Doctors, scientists, educators, policy makers, writers, artists -- people of all walks and all colors have, in their own ways, sought to make sense of this crisis and its relationship with society. From citizens to states, from medicine to prayer, from cures to cries for reform, people’s visions of how to respond to the crisis are as diverse as the people who bear its scars. The goal of this series is to give you a glimpse of these visions: the roles people of different passions and disciplines have played in this crisis that, as of March 2016 as recorded by the Department of Health’s Epidemiology Bureau, is infecting 25 Filipinos daily.

To call compassion a dangerous temptation is a little odd, but it is something every advocate understands well. It’s the temptation to give without restraint, moved by the moral compulsion to serve a higher purpose and the natural high that comes with generosity. To give, after all, is the noblest of human works – and gratitude, the noblest of all intoxicating substances. And while advocacy is preferable to drug use (isn’t it?), the risks that come with sacrificing yourself for social change can be just as daunting.

In the counseling setting, we find that each case brings their own challenges, each new therapeutic relationship coming with their own world to explore. For clients who have taken it upon themselves to save the world, their experience as advocates evokes a mix of feelings that at once fascinates and terrifies. The ambiguity that so necessarily plagues advocacy work – the tension between hope and hopelessness – raises dilemmas that escapes most of us who live unplugged from the realities of social injustice. And these ambiguities quite often escape the advocates themselves, who may end up ignoring or setting aside these fascinating and terrifying feelings in favor of what they perceive as a larger problem. After all, what are the troubles of one heart compared to the troubles of the whole world?

But as any counselor who has worked with advocates knows, it’s exactly that thinking where the troubles start. They may come to the counseling room expecting us to help bounce around ideas or offer political solutions to social injustice, but like as we might, counseling is not a meeting on strategic policy. To psychologist Rod Penalosa, the objective of the counseling relationship is to shift the focus back to them: the advocate. Because while they’re off saving the world out there, their own worlds often go unexplored.

Self-care as an issue of social justice

Rod Penalosa

While he initially intended to attend law school and practice family law, Rod explains, “I realized that psychology was a better fit for the advocacy that I had in mind, which was to support children and families in crisis and those requiring support.” To aid in the advocate’s discernment of their inner lives was itself a solution to social injustice.

A graduate of the University of San Francisco, he is currently finishing his doctoral dissertation in counseling psychology. Back in California, he worked for the Community Health for Asian Americans, a non-profit agency in Oakland that provides services to low-income clients from mostly Asian, Hispanic, and African-American communities. And here in the Philippines, he serves as a psychotherapist consultant at MedMom Child Development Clinic. He currently runs a program called Circle of Hope, which aims to provide psychological services to adolescent cancer patients and their families, the medical staff, and volunteers of Philippine General Hospital.

“As a therapist who works in a clinical group practice setting, I consider myself and my colleagues to be advocates for social justice, health and wellness, because we choose to serve the marginalized population of the community,” Rod explains. “As a gay man-of-color myself, I am considered to be a minority in most cultural norms, and I have a social obligation to reframe this image and perception that society carries by being a voice and a visible presence of healing and empowerment.”

The consequences of caring too much

When asked what advocates’ most pressing mental health issues were, he began with a description of what advocacy entails: “We are givers, nurturers, care providers, and healers. We are in this profession because it comes naturally for us to devote ourselves completely to our work, clients, principles, and causes.” In his experience however, Rod has observed a dangerous side to this devotion: a perpetuation of the mindset that says, “Always put the needs of others first before your own”. This leads advocates to disregard their own well-being.

“Many of us in this profession neglect the value of practicing self-care, which often leads to elevated amounts of physical and emotional stress,” Rod cautions. And high stress levels, which accumulate when we allow our own pain to go unattended, can take its toll in many ways.

According to Rod, some of the more familiar “warning signs” that an advocate might be accumulating unhealthy levels of stress are: fatigue and exhaustion, sleeplessness (less than 6 hours of sleep at least 3 days a week) or oversleeping (more than 10 hours of sleep at least 3 days a week), irritability, excessive and constant worrying, lack of appetite or overeating, excessive tearfulness and sadness, lack of job satisfaction, incapacity to experience any pleasure, emotional outbursts, and other physical symptoms (e.g. headaches, stomach aches, diarrhea, nausea, unexplainable muscle tension and pain, slow mobility, etc.).

“Burnout” is another term for the way these symptoms come together, and it is a shockingly ubiquitous feature in modern society. And on the advocate’s part, Rod explains, when we take on more than what is within the scope of our competence and practice, we subject ourselves to compassion fatigue. That is, we exhaust the heart – a muscle which, contrary to popular media, is by no means an infinite resource. (And when we say we exhaust the heart, we mean that quite literally.)

Rod explains the advocate’s “save the world” mentality another way: “When we aspire to ‘save’ our clients and take personal and professional responsibility for their setbacks, drawbacks, and downfall, we lose sight of the fact that we merely function as facilitators and support system. But we must remember that it is the client who has the main responsibility of actualizing the work that is necessary to improve their condition.” The client here, in this case, is the society we are working to change. And as in psychotherapy, when we plunge too deeply into society’s issues without having a firm grip on our own condition, we risk drowning. And we are of no use to anyone gasping for air.

Take care of yourself to take care of others

So while we labor on towards social justice, what can advocates do to stay well? Rod says that taking the time to create a balance between one’s private and public lives is a good place to start. "Let us not forget to incorporate play and fun into our lives. We don’t have to take life so seriously all the time. Find the means to embody and express gratitude daily. When we focus on matters that cultivate the positive elements in our lives, we create and reinforce habits and a lifestyle that promote an optimistic outlook on life.”

“We should be aware that we are just as responsible for our own empowerment and liberation just as we are advocates in liberating and raising the consciousness of others,” Rod reminds us. “We must always ask ourselves: What is the cause of my advocacy? Why is this important to me? How can I utilize my strengths in advocating for others?”

And taking care of yourself, Rod emphasizes, is a responsibility advocates have not just to themselves but to those they serve: “We have to remember that we can create long-lasting, impacting changes if we are clear about our mission, vision, and boundaries.” The point on boundaries is especially important: in serious HIV/AIDS advocacy, as with all advocacies that involve the body, we are so often forced into the most raw and vulnerable spots of the people we serve that it becomes so easy to get lost in their pain. But as advocates, we cannot afford to get lost.

So in counseling the advocate, the general advice is this: if we keep ourselves in mind, we stand a better chance of saving the world.