12 May 2012

Getting Out More Than You Put In

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, cliche 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.


  1. THANK YOU for this post! What a wonderful perspective. I use my voice and platforms to give a voice to the voiceless... advocating for their care and needs. My Mom has Spasmodic Dysphonia and deals with limited or no voice... The members in my community (http://www.VoiceMatters.net)can relate as well. They are truly the ones who matter most. I tell them, all the time, their voices matter! I want to spend as much of my time as possible, creating opportunities for them to be heard (in whatever way possible)! THANK YOU SO MUCH for this post!
    I LOVE your line about... "No one can teach how to be a patient." That is soooo true!

    1. Very best wishes on your advocacy journey. It's wonderful to know that my words help another advocate.

  2. This is one of my favorite post. As a new advocate, I sometimes wonder if I have the skills needed to accomplish my task at hand on any given day. These are the tasks that I chose following the leadership of my many mentors. You, of course, are one. Your accomplishments are stepping stones for people like myself who have the passion, you describe, without the credentials . Merely touching the life of another patient empowers me to join others as we learn the road of advocacy. Thank you for empowering us.

    1. It means a lot to me that you too are working to empower others. Some of the best successes come not from being successful but from helping others be successful. I appreciate your kindness and wish you the best.

  3. A lot of these points are near and dear to my heart. I think we are the same age, or close, so it is interesting to see how our experiences are similar and different. In a way I was lucky enough to be diagnosed before high school and was able to make choices in education and career that would give me a good shot at self-sufficiency. That's basically my goal, self-sufficiency. This is an extremely low bar by "normal, healthy people" standards, of course. But it is a huge challenge and accomplishment, often, for people like me with moderate/severe chronic illness. I spent 4 years getting a degree in a field that would provide me a desk job with health insurance. I spent 10 years working in that field, overlapping 4 years of night classes to earn an MBA in the hopes of advancing my career (and, importantly, earning potential). However, I did not really begin to think about advocacy (beyond fundraising for charity, maybe) until I was out of college.

    I also have to struggle with my own abilities (limitations due to illness) vs. the prevalent ideas of pushing yourself to achieve "anything" and "doing what you love." There are so many ideas that are meant to motivate, but can really cause conflict and doubt over whether I am trying too hard, or not hard enough. On top of that you have people who would seek to take advantage, as you mention. There are also those things I would really love to do, but often have to decline even though it is difficult emotionally.

    I have to think of my life and my advocacy work as grains through an hourglass, hoping to extend my work and life long enough to have a pile of sand that amounts to anything. I know that pushing myself too hard and too much will result in a total loss of ability to do anything. The tension comes in trying to find that magic balance, know when to say no, and stay strong in my own beliefs that I am doing "the right thing." It's hard.


"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha

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