I recently finished In the Kingdom of the Sick by writer, author and health activist Laurie Edwards. It is a fascinating exploration of the intersection between illness and society. Coping with chronic illness can have a narrowing affect on your life as you deal with daily symptoms and doctors appointments. However, as patients, it is important to become aware of the broader scope of the issues surrounding illness. I was intrigued to read about the social context and history behind feelings that I thought were personal. Even as an individual, you are part of the broader “Kingdom of the Sick.”
I was delighted to connect with Laurie and to bring you this Q&A related to her new book.
Q: After the success of your first book, Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties, where you chronicle much of your personal experience with illness, what in your experience as a patient sparked your interest to look at the broader perspective of illness in our history, culture, and politics?
My first book, Life Disrupted, is indeed more personal and prescriptive, and offers insights and experiences into navigating illness as young adults. In the Kingdom of the Sick is a much different book, and really takes a big-picture look at the various cultural and scientific influences on the trajectory of chronic illness and the patient experience. I was teaching Susan Sontag’s Illness as Metaphor as a fledgling writing instructor at Northeastern University when I started to question the semantics of illness: the definition of chronic illness is fairly static, but the scope has grown so much. This book started as an attempt to look at the consequences, positive and negative, of the shift in scope.
It 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 society in which patients live.
Why does this all matter? An estimated 133 million patients live with chronic illness, and by 2025, that number is expected to reach 164 million. It is responsible for 7/10 deaths, as well as ¾ of all health care spending. It is not something that happens to other people—it will happen to most of us, and there are still these underlying assumptions and misconceptions about patients that are problematic, which is why we need these conversations.
Q: In the Kingdom of the Sick, you discuss many large-scale health activist movements focusing on women, AIDS, breast cancer, Lyme disease and others. From the successes here, how can patients become activists in their own exam rooms?
I have to say I didn’t expect a social history of illness to also become such a history of activism and advocacy. In retrospect, this makes total sense, but it wasn’t until I took stock of all that I had that it really hit me how connected it all is. You really can’t separate whatever scientific or technological breakthroughs we’ve experienced from the patients and advocates who fought for them.
Nowadays, so much of our advocacy takes place online, and this advocacy is as critical now as it was during, say, the disability rights movement or the grassroots women’s health movement or early HIV/AIDS movement. Now, patients can mobilize despite geographic or physical limitations, they can push for research and funding, they can actively encourage enrollment in clinical trials. From tracking data on smart phones to sharing stories in patient communities, there are so many resources we can use to be informed, engaged partners in our care.
The sheer amount of information out there is a blessing and it also a challenge, and there is more and more responsibility on us as patients and as advocates to be discerning in what we read and share and what we put out there for consumption.
Q: As you explore in the book, there has been a long history of connecting illness with deficits in spirituality and/or personal character: from Plato to the Bible to Benjamin Franklin’s self-help homilies. On a personal note, you talk about physicians in the ER and ICU that suggested your respiratory problems were caused by life stress. However, in reality respiratory problems, that resulted in getting behind, caused you stress. How do you perceive the modern, persistent mind-body message?
A dangerous assumption about patients with chronic illness is that their maladies are somehow their own fault: if only they had more willpower, or physical or mental fortitude, they could prevent or improve their conditions. We see this in the criticism of patients with type 2 diabetes or heart disease that should just go on a diet, just as we see it in the treatment of patients with more nebulous conditions like chronic fatigue syndrome or fibromyalgia, who should be able to push through the fatigue. Everyone gets tired, right?
Culturally, we tend to value and prioritize self-reliance, physical fitness, and independence, and chronic illness flies in the face of these attributes. Benjamin Franklin was known for his fervent self-help talks, and since then, self-improvement has been a consistent feature of American life. These notions of self-reliance and self-improvement set up expectations that impossible to meet when you live with chronic illness, and not only have physical limitations and symptoms but might also need help with medical bills and other aspects of daily life.
Blaming physical symptoms on mental health problems is hugely problematic and can lead to dangerous delays in treatment. Obviously there is a significant mind-body connection, but in a lot of cases I think the medical establishment has it the wrong. For many patients I know, it is the debilitating and disruptive nature of illness that causes stress and emotional tension.
Gender and pain is a huge theme in the social history of chronic illness, and really connects with this idea of reliance and reliability. Men are expected to be stoic, while women are often told their pain symptoms are “emotional” or “psychogenic.” Women are more likely to develop pain conditions and are more sensitive pain, yet are more likely to be dismissed or have their pain treated less aggressively. As you mentioned, it happened to me—when I was in the ICU with respiratory problems that weren’t responding to medications, suddenly it became my fault. Perhaps I was just too anxious? As a young woman in college, perhaps I simply couldn’t handle the stress?
We like to solve problems, and more than ever, we expect immediate solutions. Patients with chronic illness simply don’t fit that mold, and when answers are not easy to come by, a space opens up for skepticism and doubt. Obviously this is a brief response to a complex issue, but I hope I’m getting at the heart of it here.
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You can follow Laurie by visiting her blog: A Chronic Dose.
In the Kingdom of the Sick is on sale now at Amazon.