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.
Thanks so much for reading the book and asking such thoughtful questions, Leslie!
ReplyDeleteGreat post, very interesting, thanks for sharing :) x Hayley-Eszti
ReplyDeletewww.hayleyeszti.blogspot.co.uk
This is cool!
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