One of the great blessings of my life is having a mother who continues to be avidly curious about the world. She reads voraciously – non fiction, biographies, historical fiction, poetry. She reads armed with pencils, highlights and post it notes. She has a completely unmanageable list of books she must read immediately. And most remarkably, she reads and then she puts it to use. So when she told me about In the Kingdom of the Sick and then even sent me a copy, I knew I had to read it. I did so, armed with pencil and post it note, and I hope that I can put some small part of it to use in my life. I will start by sharing some of it with you.
Laurie Edwards, author of In the Kingdom of the Sick, is a health writer, teacher, and a patient herself of several chronic illnesses. She begins her book with the following insight; as we live longer and our management of infectious diseases and accidents improves, the incidence of chronic illness increases. “Of the 133 million Americans who live with chronic disease, many have more than just one condition, and collectively, 75% of health care spending (an estimated trillion in 2005 for example) is attributable to chronic disease.” The proportion of deaths related to chronic illness had risen 250% from the beginning of the twentieth century til now, putting us at 7 out every 10 deaths. Concurrently, we have seen an increased focus on ethics and collective decision-making in the medical field that protects the patient in much needed ways. There are numerous federal commissions and legislation now in place that make us safer as patients than we were a century ago. But as Edwards points out, all this regulation puts some distance between patient and doctor, as there is now an unseen third-party, the government, involved in the relationship. This gap “left plenty of space for the disease activists and patient advocates who emerged during the various social justice campaigns that followed.”
The history of how we have filled the gap gives the book its structure. As Edwards chronologically reviews various government regulations and advocacy movements, she also highlights some personal aspects of chronic illness from anecdotal narratives. This approach gives the book a fairly wide scope of content; she manages to cover disability, women’s health, HIV, breast cancer, CFS, chronic pain, Lymes Disease, Complimentary Medicine, direct to consumer advertising, and participatory medicine to name a few, all within a few hundred pages. Her notes and bibliography cover another 22 pages, which I love. I find thorough reference pages very comforting.
Here, in my words, are the top five things that I learned from In the Kingdom of the Sick about how we, as a society, can improve the circumstances of our growing chronically ill population…
*Our medical establishment needs to strive for more acceptance of patient involvement and better understanding of chronic pain.
*Our research needs to find better balance between understanding, prevention and treatment of a disease such that all components are supported by funding.
*Our marketing and personal awareness need to eradicate the culture of survivorship that leaves no place for chronic illness.
*Our patient advocacy needs to model the kind of solidarity seen in the disability, women’s health, and HIV movements, despite the fragmented nature of the diseases and lifestyles of chronic illness.
*Our patient-doctor relationships needs to become patient-doctor collaborations, based on transparency and communication.
In writing a history, Edwards shows what has worked and what hasn’t for the chronically ill patient. And as a patient and a writer, she has thought about the problem a lot more than I have. I finished her book feeling even more a part of a community, now that I think of that community as being more inclusive. I don’t always relate to the MCS community – how can any of us always understand each other? We have such a wide range of capabilities,symptoms, and history. But once I think of myself as being being part of an increasingly large group of people with chronic illness, then a switch from self-sufficiency to solidarity seems more plausible. All of us have some degree of environmental and genetic factors that triggered our illness. All of us are sick now because of this time and place – we should strive to know why that it is and what it means.
The pragmatist in me appreciated the historical perspective of this book. But the patient in me was captivated by the observations from other patients, including the author, of what it feels like to have a chronic illness. These insights keep the book feeling intimate and real. As an amateur writer and frequent online reader within the EI community, I know how hard it is to put our surreal experience into words.
Here, in Laurie Edwards’ words, are some aptly put thoughts…
“The very nature of chronic illness – debilitating symptoms, physical side effects of medications, the gradual slowing down as diseases progress – is antithetical to the cult of improvement and enhancement that so permeates pop culture.”
“With invisible illness, the very same lack of obvious symptoms that allows us discretion over when to disclose illness can lead to further isolation or alienation.”
“Even if we don’t get cures…we still deserve and should expect solutions to make our lives as productive as possible. The disability rights activism of the 1960s and 70s inevitably allowed patients with chronic illnesses to voice this.”
“Most doctors are programmed to diagnose, heal or say goodbye. The more resistant a set of symptoms is to diagnosis and the longer the process drags on, the more porous this system becomes.”
“The Tired Girl stands for so much that society disdains: weakness, exhaustion, dependence, unreliability, and the inability to get better…The Tired Girls have few cheerleaders, and often lacking correct diagnoses or effective treatments, wouldn’t even know how to define what or where their finish lines is.”
“The access we have to information is an incredible opportunity, but it puts more onus on us as readers to think critically about the source, the authors, the agenda and the validity of information.”
“The internet and social media platforms are the direction advocacy is headed, which signals that like it or not, evidence based medicine is going to need to utilize these same technological capabilities on an even greater scale.”
“Chronic illness is the embodiment of a preexisting condition.”
“When the goals become fragmented and people need to defend, justify, or explore the cause of disease as well as champion for various rights, something has to give.”
“More than ever, the onus is on the patient to take part in his or her narrative, to mesh the science that diagnoses and treats us with the culture and technology that has the potential to heal us.”
I have another round of test results and doctor appointments coming up this month; a cycle we are all familiar with. I hope to take some new perspective with me into those conversations and we’ll see if the outcome is any more healing.