Today our e-mail in-boxes tend to fill up with information on various aspects of health care; often, there are way too many to read them all. Recently, my eye was caught by the headline on one particular e-mail link from Jessie Gruman, "Lessons from the Year of Living Sick-ishly."
For many years, Gruman has been the president of the nonprofit Center for the Advancement of Health (CFAH), which conducts research, communicates findings, and advocates for policies that support everyone's ability to benefit from advances in health science. She has personally experienced several bouts of life-threatening illness, and this history informs her writing about the health-care system as a whole. After all, how many experts do we have who begin a sophisticated analysis of the benefits and drawbacks of screening tests by saying "when you have had cancer as many times as I have ..." and then going on from there.
In "Lessons from the Year of Living Sick-ishly," Gruman describes how, after her chemotherapy ended, she phoned her oncologist for advice on what she could do to recover more quickly. "Buck up. You are going to feel bad for a year," the nurse told her. With hindsight, Gruman calls those words "the most helpful advice I received."
Looking back on a year that followed surgery for stomach cancer plus aggressive chemotherapy, Gruman realizes that she has learned key lessons. "I learned that you can't necessarily hurry healing ... even if you work hard at it," she writes. "On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed ... and it still took a year before I felt normal again. How frustrating was that? ... This experience ... reminded me of how unruly, unpredictable and often uncontrollable the effects of disease and its treatment are on our bodies."
She found that online access to friends and colleagues "allowed me to feel less isolated over this past year than I have during previous illnesses," and high-tech methods helped her collect health information and schedule appointments. But once she started treatment, she writes, "feeling ill extinguished my curiosity about my disease... only occasionally could I summon the energy to reach out even to close friends and family... I return to the world of the healthy with the impression that the value of health information technology is tactical, not transformative, at least for the sick person: the suffering remains."
Gruman has a remarkable knack for seeing health care from two different viewpoints at the same time: as an observer of the entire health-care system, and as someone with intimate personal experience of illness. "Standing for the past couple of months on the shifting border between illness and health, I've experienced how (fortunately) easy it is to forget how illness eats away at the balance of one's mind, body and spirit," she writes. "The suffering caused by illness ... might take a more modest toll if all of us – patients, professionals, caregivers, family, friends and colleagues – have clearer expectations about the arc of illness and how it affects and can be affected by each of us."
Prepared Patient Forum
This essay was one in a series on the Prepared Patient Forum (PPF), a blog hosted by CFAH. Gruman posts regularly in the forum, covering a full range of topics. Some of her recent entries include:
- Friends, Fatigue and the Slow Slog Back
- The Lemon of Illness and the Demand for Lemonade
- Why Angry Birds Gets More Play Than Health Apps
- I am Not My iPhone
- Will We "Just Say No" to Screening Tests?
A number of health-care experts also contribute viewpoints to the forum. Trudy Lieberman, past president of the Association of Health Care Journalists, recently wrote an article on what to do when an insurance company says no. Andrew Schorr, the founder and host of the Patient Power website, wrote an article on the disconnect between hospital marketing and what patients actually need.
Archived blog posts are also grouped by topic, so you can easily find discussions on preventive health care, making treatment decisions, health promotion, patient perspectives, and communicating with your doctors.
There's also a section called Prepared Patient 411, with links to essential information such as standards for health professionals, preparing for an office visit, asking your doctor questions, and maintaining a personal health record.
Prepared Patient Forum:
Directory of Online, Phone and Community Resources:
Guidelines for PPF Contributors
The editors say, "PPF is a place for people who are looking for information and resources about how to find and use safe, decent health care. We ask that your contributions be relevant to this audience. We prefer to publish blogs and columns written in the first person; we want our content to be based on personal experiences."
For more details, see www.preparedpatientforum.org/about/guidelines.cfm
Jessie Gruman on Twitter: @jessiegruman
The Center for Advancing Health: www.cfah.org/
Chart outlining CFAH's activities and services: www.cfah.org/about/whatwedo.cfm
Elaine Zablocki has been a freelance health-care journalist for more than 20 years. She was the editor of Alternative Medicine Business News and CHRF News Files. She writes regularly for many health-care publications.