Skip to main content

The Advocate As Caregiver

What beats you down? What breaks you? When that happens, where do you go? I've spent the past week living a bit more internally. I needed to step back. I needed a little perspective.

There are so many voices in this chorus of healthcare advocates that I worry if some singers even notice when others are too overwhelmed to continue carry the tune within their hearts and go silent. In the worst case scenario, a tired voice drops out and walks off stage, closes the curtains behind him or herself, and exits the building. No one stops to notice. No one says, "We need you." Some members of the chorus may even go so far as to think the tired singer was of no use, that the singer's voice was of a lesser quality, that the singer did not add value to the chorus, and therefore the singer will not be missed. Broken, the tired voice decides leaves singing behind altogether. The chorus is diminished both by the singer's absence and the absence of the singer's supporters. As the act plays out time and time again, what was once a chorus deteriorates into a solo. The effect of standing on stage alone depends on the singer left standing—either the soloist manipulates the spotlight or the song is silenced altogether. Neither outcome is preferred.

We can not be advocates alone. We must have the support of our fellow advocates, which comes in large part from supporting our fellow advocates. The same principles that we apply to teaching caregivers to care for themselves—allow for breaks, seek outside help, reward yourself—should be applied to the advocate community. What else is an advocate other than a caregiver who cares so intently as to try to affect change? Change is difficult to attain. It is made even more so, when the change that one is pushing for relates to a patient community that is, by its very nature, beleaguered by disease conditions. Such advocates themselves often are impacted by the disease they try so hard to support. When a member of the patient community suffers an event or is overwhelmed by symptoms, the community rallies around that patient. However, patient advocates may well find themselves reluctant to admit feeling the same things that the patient community experiences. This behavior is not uncommon in families. Mothers tirelessly provide for children but never confess to being run ragged and depressed. Fathers work ceaselessly yet never say they feel unappreciated and overlooked. Patient advocates may develop these same complicated relationships with the communities they are trying to serve, which begs the question—who advocates for the advocate?

Without resources in place to help advocates, I fear that our chorus will lose valuable members. During a recent TweetChat about healthcare leadership, the great @NateOsit said that a true leader enables others to become leaders. There is much to be learned from that statement. Today's advocate leaders have taught me so much about being an advocate, and I am making it a goal to in turn teach others about being an advocate. It is my hope that by doing so, no single advocate will feel overburdened by his or her responsibilities and that the overall community of advocates will grow and become stronger, which will mean more patients will have someone on whom they may rely. Healthcare professionals must remember that many advocates came into their roles for much the same reason as they were—a call to help and serve. Let us give those who have arisen to meet the need to help and serve the emotional and physical care to continue.

Comments

Popular posts from this blog

Access Medicine X: Live Stream Brings Silicon Valley Direct To You

Stanford Medicine X is a catalyst for new ideas, designed to explore social media and information
technology’s power to advance medical practices, improve health, and empower patients to participate in their own care. But Medicine X also seeks to engage and empower those unable to attend in person to still get involved in the discussion.

Through Medicine X’s Global Access program, main stage content from the three-day conference will be made available through a high-quality live stream. Anyone with an Internet connection around the world will be able to view keynote speakers such as Daniel Siegel, MD, clinical professor of psychiatry at University of California-Los Angeles and author of The New York Times bestseller Brainstorm: The Power and Purpose of the Teenage Brain, and panel discussions such as Gonzalo Bacigalupe's focusing on the e-health movement and inequality among marginalized populations.

“Medicine X has distinguished itself through a singular commitment to inclusivit…

And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in publ…

Crowdfunding Creativity

For as involved as I am in the national (and, at times, international) healthcare social media community, I find myself in a local void. The mountains I call home are not the epicenter of anything to do with healthcare or social media much less the two together. I've been chipping away, trying to carve out a foothold such that the wealth of education and opportunity found in healthcare and social media can enrich the lives of those I routinely connect with in real life as it has my own. It's slow going. Every fear, every socio-economic force that pushes back against the #hcsm tide can be found here. But today... today made a new friend.

As like minds are prone to do, @SociallyMD and I connected first via Twitter. Lo and behold — we live a mere 20 minutes apart. Prior to departing for Stanford's Medicine X conference, I suggested that since we were the only two Tweeps occupying the local #hcsm space, @SociallyMD and I should meet. And meet we did, instantly connecting profe…