When I developed a urinary tract infection and numb fingers at age 27, I didn’t know that these were the first signs of what would become a lifetime with chronic illnesses. Two years later, severe fatigue and optic neuritis led to the multiple sclerosis (MS) diagnosis. I had no idea what it would mean . Over the following years, I switched career direction several times searching to find something I could keep doing in spite of periodic debilitating symptoms. When I developed a 2nd autoimmune disease, ulcerative colitis (UC) 13 years later, I had a job I loved and two young children. Over the next few years, I became very ill and unable to do anything ‘well’. Very reluctantly, I left the workforce.
But I desperately wanted to work again. I didn’t feel whole without it. When an ileostomy cured the UC and MS drug therapy slowed down the course of the disease, I was ready. I couldn’t return to my former career path so I ‘reinvented’ myself. By age 50, I was in the best health I’d been in for 20 years and self employed, coaching people with chronic health challenges around their work life.
But in my late 50’s, old neurologic “damage” worsened and once again, I started to lose chunks of time to debilitating symptoms and illness management. This time, however, I could continue to work because working for myself gave me the flexibility I needed.
Over the past 15 years in coaching people with chronic health challenges, I’ve learned that my story is not unusual.
In the Kingdom of the Sick, by Laurie Edwards, takes it’s title from Susan Sontag’s book, Illness as Metaphor. I read Sontag’s book when I was first diagnosed but I couldn’t grasp the magnitude of most of what she said because I was a newbie to this Kingdom. Now I do.
Edwards quotes Sontag, “Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Turning the pages of this beautifully written, highly informative and very important book, I seemed to pump my fist in the air, signaling affirmation and gratitude.
For many years, there was little written on the subject of living with illness. That has changed and now there are numerous, useful books for those of us living with illness (take a look at the left column of this blog, Books on My Mind). But In the Kingdom of the Sick offers up something different. It gives us the tools to develop a societal context for how we perceive ourselves and the perceptions we encounter.
I share the top 5 points in her book that I found particularly compelling (this is pretty arbitrary since I bookmarked almost every page):
1. Chapter 1, p.16 : “This rational, observational medicine centered on the patient, not the disease, and Hippocrates and his followers were interested less in the specifics of singular diseases and more in understanding the natural course of an illness.” “The Hippocratics’ view was actually quite simple: health represented equilibrium, while illness represented an upset to the harmony.” (I know that’s really 2 but…)
2. Chapter 1, p.17: “…the Middle Ages, influenced by the spread of Christianity, reflected a spiritual understanding of disease and plague as wrought by sin. This Chapter resonated with me because it offers an explanation for the development of bias toward illness .
3. Chapter 2, p.34: “the very nature of chronic illness…. is antithetical to the cult of improvement and enhancement that so permeates pop culture.”
4. Chapter 4, p.85: “…if the main focus and success of the women’s health movement was in redefining the doctor-patient relationship, then why are there still so many instances where women in pain have such unsatisfactory encounters?”
5. Chapter 8, p.163: “Participatory medicine is a model for moving forward within the medical establishment as empowered patients – and the very tools that make this change possible are the same ones that can distract from this forward motion.”
I’ll close with 3 questions I posed to Laurie:
RJ: We both know that your life is full with college teaching, your writing projects, your family and, your own health numerous health challenges. What propelled you to do the copious research and writing that this required?
LE: Quite simply, we can’t afford to ignore chronic illness. An estimated 133 million patients live with chronic illness, and by 2025, that number is expected to reach 164 million. It is responsible for 7 in 10 deaths, as well as ¾ of all health care spending. But it’s so much more than that. Chronic illness is not something that just happens to other people. It will happen to most of us, and there are still underlying problematic assumptions and misconceptions about chronic illness. For example, there is still this idea that people who are sick are sick through their own fault. Consider HIV/AIDS or type 2 diabetes and the underlying idea that people with CI are somehow weaker. This is also seen in the way we treat women with pain, for example, who are often told their pain is either in their heads, or that they should just be able to push through it. We’ve seen some wonderful books that look at pain, cancer, and other diseases, think Melanie Thernstrom’s, The Pain Chronicles or Siddartha Mukherjee’s, The Emperor of All Maladies. But no one has really taken stock of chronic illness as an entity, with all its complexities and competing agendas, and that’s what I wanted to accomplish.
RJ: What do you think makes this book important now?
LE: In the Kingdom of the Sick is a social history of chronic illness in America because I found it was impossible to extricate the experiences of living with physical illness from the competing forces of culture, social norms, and technology that surround patients. Inevitably, this became as much a social history of activism as it is a social history of disease because it was equally hard to tease out advancements in treatment and research from the patients and advocates who fought for them.
RJ: Is there one BIG message that you hope people will get from reading this?
LE: The definition of chronic illness as something that is treatable, but not curable, chronic has changed so much. What are the consequences of that, both positive and negative? That’s where I started.
I wish I’d had Laurie’s book when I started this journey.