Today I have the honor of having Laurie Edwards here, author of “In the Kingdom of the Sick: A Social History of Chronic Illness in America”.
I had the pleasure of meeting Laurie several years ago. Her first book, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties”, resonated with me as a young twenty something who was just beginning to cope with a diagnosis of multiple chronic illnesses. And now her new book, “In the Kingdom of the Sick”, resonates with me as I prepare to complete my PhD in sociology, with a focus on health and social movements. So as far as blogging relationships go, she’s an old friend.
And if you’re a fellow chronic illness blogger, you’ll recognize a host of characters that play a role in the book, including Duncan Cross, Aviva of Sick Momma, Barbara Kivowitz of In Sickness As In Health, Rosalind Joffe, Kairol Rosenthal of Everything Changes, and Britta formerly of Chronically Young.
While I would liked to have seen a bit more in the book specifically from patients with lupus and rheumatoid arthritis – my personal biases – this book provides context for why the medical system works the way it does today, and how that impacts patients, in a very real way. This is an important piece of the story, both for patients who are living with chronic illnesses, family and friends of patients, pharmaceutical companies who create drugs, and doctors.
First off, can you tell my readers a little bit about yourself?
LE: I am a 33-year-old mother, writer, and lecturer at Northeastern University, where I teach writing for the health sciences. I am also a lifelong patient with chronic illness—I have primary ciliary dyskinesia (PCD), a rare genetic lung disorder, bronchiectasis, celiac disease, and other conditions.
What prompted you to write a book on the “social history of chronic illness”?
LE: Scholar and medical historian Roy Porter asserts, “Disease is a social development no less than the medicine that combats it. 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.
Why is it important that the lay public know this information? Patients? Medical professionals?
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 7/10 deaths, as well as ¾ of all health care spending. But it’s so much more than that, and that’s why we need this dialogue. Chronic illness 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 it that are problematic. For example, there is still this idea that people who are sick are sick through their own fault—consider AIDS or type 2 diabetes— and this underlying idea that people with chronic illness are somehow weaker in character or fortitude. This is amplified 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.
The definition of chronic illness—something that is treatable, but not curable—has remained fairly static, but the scope of conditions now considered chronic has changed so much. What are the consequences of that scope change, both positive and negative? That’s where I started.
I appreciate your discussion of the disability rights movement, the strides it made, and the difficulties that remain for people with chronic illnesses. As a personal example, as a student, I have found that the student disability office isn’t really equipped to deal with students who have chronic illnesses that change and don’t require a standard accommodation. Given this, what would you suggest the legions of chronic Illness disease advocates online do to create systemic change, both online and offline? (Of course books like yours do a great job of bringing many important issues to the fore)
LE: I think the Americans with Disabilities Act is certainly a solid foundation, but the trouble students with chronic illnesses often experience in trying to get accommodations is similar to the struggles we see in the workplace. Both speak to an underlying tension with chronic illness itself: it is often invisible, and it is unpredictable.
When it was passed in the early 1990s, the ADA envisioned physical disability as a constant state—if you had vision impairments, hearing impairments, or mobility impairments, for example, those impairments would remain static. As you know, when it comes to chronic illness, the fact that symptoms and needs can fluctuate can really make it difficult to have a conversation about what patients need.
As an instructor and a patient, I see those challenges from both sides: when should I disclose illness to my employer? How can I help students with chronic illness in my classes, especially those who choose not to register with disability services, or whose conditions are really disrupting their academic experience? I always say that communication is key—the more I know about what is going on, the more flexible I can be.
Cultural change is slow to evolve, but it starts with conversation and awareness that there is a problem, and in that respect, the more we acknowledge the gray space that is chronic illness and are able to clearly define what we need, the better. We have gained so much from the disability rights movement and have acquired a phenomenal vocabulary to discuss accommodations, but now we need to figure out how best to apply it to chronic illness.
You focus a lot on women. As someone who has an illness (lupus) that primarily effects women, I know firsthand that gender plays a distinct role in healthcare delivery and outcomes. What do you think are some of the key issues relating to gender and health?
LE: Of all the major themes in this book, the relationship between gender and illness is one of the most compelling, and resonant. The shadow of hysterical illness still lingers today, and the “it’s all in your head” mentality contributes significantly to delays in diagnosis and treatment of many chronic and autoimmune disorders, particularly in terms of pain conditions.
For example, women are three times more likely than men to develop autoimmune diseases, two and a half times more likely to develop rheumatoid arthritis, four times more likely to have chronic fatigue, and nine times more likely to be diagnosed with fibromyalgia. Not only are they more likely to develop pain conditions but they are more sensitive to pain. Research shows that women are more likely to have their pain symptoms dismissed as psychogenic or emotional. When they are treated, it is often less aggressively than men are, and women are more likely to be prescribed antidepressants where men would receive painkillers. As many as 50 million American women live with a neglected pain disorder, which is poorly understood and poorly researched. Lack of physician education about female pain disorders and appropriate pain management compounds the problem, and delays in appropriate diagnosis and treatment lead to worsening symptoms and decline in both physical and mental health.
It’s such a complex and relevant topic—I was on Fresh Air with Terry Gross a couple weeks ago and a lot of what aired was about gender and pain, and the e-mails continue to pour in from people who share the same basic story of doubt, even if their disease-specific symptoms differ. I talk about this in much more depth in the book, but I really believe sex-based clinical research is the answer—the best way to dispel myths and misconceptions is with facts, so the more we understand about how men and women experience pain, the better.
You make an interesting point about walk-a-thons, other fundraisers, and consumerism. How do these things both help and hurt the patient groups they represent? (I’ve noticed that in the walks that are offered for lupus and rheumatoid arthritis, they simply do not make sense for people with these illnesses).
Cause-related marketing for diseases has done a lot to raise awareness, and to fundraise for research and especially for cures. There are a lot of positives to this—these events build rapport and community, decrease the sense of isolation illness can cause, and help raise money for more effective treatments.
But consider another angle—with chronic illness, there is no finite “finish line” and cure and such cultural emphasis on survivorship has the potential to leave out so many of these experiences. Raising awareness of diseases is setting the bar too low. It’s an important step, and of course, so is the quest for a cure, but we also need to make sure the daily needs and realities of patients with illnesses don’t get lost in the shuffle. I think that’s where a lot of the criticism about pink-washing in particular, and cause-related marketing of disease in general, comes from. As one small example, a couple of years ago, Susan G. Komen for the Cure launched a special perfume where proceeds would benefit its quest for a cure for breast cancer. It ended up deciding to reformulate the perfume after critics claimed it contained neurotoxins that can cause cancer. Plus, as many patients pointed out, women who are undergoing chemotherapy to treat their breast cancer are extremely sensitive to smells and get nauseous easily. Perfume is not exactly something that makes sense.
Duncan Cross, an interviewee in the book, mentioned a charity event for Crohn’s disease he had to decline because the bike route didn’t have enough port-a-potties, an irony that really points to this tension in a striking way.
These are just some examples, but let’s make sure patients already living with illness can access the specialists they need, get coverage for the medications they are prescribed, and have the psychosocial support systems they need, too. I’m a rare disease patient and course I would love a cure, but I don’t think about it all that regularly. I’m trying to get what I need so I can be as productive as possible.
What’s next for you?
In the short term, I’m looking forward to having more time for my freelance opportunities, and more time with my family (and more sleep!) I will definitely write another book, but for right now, I’m enjoying talking about In the Kingdom of the Sick and doing what I can to get the book’s message out there.
Thanks, Laurie, for including Getting Closer To Myself on your virtual book tour.
*I received a free copy of this book courtesy of the author. However, my choice to have Laurie as a guest blogger was my choice, and had to do with my personal opinion of the book.