It’s a matter of return on investment.
We give. We give our time, our energy, our talents. what do we get in return? What do we get out of what we put in? In love, in life, in our family, in our work, in our passions. There are the lucky ones for whom work — which brings the most concrete return on investment — also brings the esoteric returns: happiness, satisfaction, pride, accomplishment. And yet there are those for whom their passion brings these things while failing to bring in the necessary financial returns to continue doing them. How does one balance what one needs to do with what one loves to do?
A fellow health activist posed a question on Wego’s forum — how could she translate her passion for being a health advocate and helping others into a paying gig? I had no answer for her, short of being hired on to a pre-existing health advocacy organization or starting her own organization. Either way, she would need to be willing to work another job for income or do without income until the organization was well established enough to both generate finances enough to cover necessary advocacy expenses and pay a salary. Neither option is an easy go, and, of course, neither option comes with a guarantee of success.
Why does it have to be so hard for those who are willing to help to be able to help? Good help is hard to find, yet there is a talented bank of health advocates that is underutilized, or worse taken advantage of, simply because these advocates are patients. Patients who are health advocates most often do not come with degrees in social work, psychology, nursing, or adult education that are typically required of professional healthcare advocates. This lack of training is not an indication of a lack of ability; rather it is a result of the fact that many patients come into advocacy later in life. Patient advocates are motivated by their personal experiences. What they have to offer is a special insight into the disease process that can not be taught by any degree program. Their skills, cliché as it may be, come from the school of life and are therefore uniquely genuine. What technical skills are required of professional advocates — HIPPA compliance, conflict resolution, team building, medical coding, active listening, redirection, and so forth — can be taught from the book. No one can teach how to be a patient. Having been a patient doesn’t even necessarily mean that one is able to completely understand another patient’s experience. Yet having been a patient, having dealt with a disease, endows one with a degree of compassion and empathy that simply is not felt by those who have not suffered the disease at all.
Our healthcare system must make better use of this wealth of untapped resources. Bring these passionate advocates into the medical office. Put them to work. Allow a human connection back into medicine. We connect and communicate with stories, and as we are permitted to tell our story to another, we are suddenly made to feel less afraid, less alone because in that moment comes recognition of a shared narrative, in that moment “I” becomes “me too,” which is at least double the return on investment.
Editors Note: As with all guest blog submissions, the views and opinions expressed on this guest blog are purely the bloggers’ own and do not necessarily reflect the thoughts or opinions of Global Genes | R.A.R.E. Project. Any product claim, statistic, quote or other representation about a product or service should be verified with the provider or party in question.