http://www.psychologytoday.com/blog/turning-straw-gold/201306/in-the-kingdom-the-sick-interview-laurie-edwards
Turning Straw Into Gold
Life through a Buddhist lens
In the Kingdom of the Sick: An Interview With Laurie Edwards
Laurie Edwards has written a compelling book on the history of chronic illness.
Laurie Edwards
Now Laurie has written a social history of chronic illness in America, titled In the Kingdom of the Sick. This was a major undertaking and Laurie has succeeded most admirably. In a starred review, Booklist calls it, “an indispensable book for anyone with or concerned about chronic disease, and everyone interested in the health professions.”
Here is my recent interview with her:
Toni: Can you give us some background on your own chronic illness? What is your diagnosis and how long have you been sick?
Laurie: I am a lifelong patient with chronic illness—I have primary ciliary dyskinesia (PCD), a rare genetic lung disorder, bronchiectasis, celiac disease, and other conditions. In patients with PCD, the cilia, the tiny structures that line the respiratory tract and help clear out debris and secretions, don’t work. This leaves us more susceptible to infections, decreased oxygenation, and long-term lung damage.
I’ve been sick since birth, and spent most of my life in and out of hospitals as an inpatient and undergoing many surgeries. I wasn’t diagnosed with PCD correctly until I was 23. Getting the right diagnoses was truly life-changing. Now that I know what I have, I can implement better preventive therapies, like daily chest physiotherapy, and medicine regimens, and my quality of life and productivity have increased dramatically.
Toni: So this is a rare disease and it was hard to get it diagnosed. Can you share with us the unique challenges that people with rare diseases face? Is it common for them to be hard to diagnose? Are people less accepting of them as they are of more well-known diseases? In other words, are people with rare diseases more likely to be dismissed as "all in your head" type patients?
Laurie: Yes, long diagnostic journeys are all too common with rare disease patients. There are almost 30 million Americans who live with nearly 7,000 rare diseases. While a rare disease is one that affects fewer than 200,000 patients, we often make up incredibly small patient pools. This is one of the biggest challenges rare disease patients face, since delays in diagnosis can lead to disease progression.
Unfortunately, I do think rare disease patients can fall under the “it’s all in your head” stigma. When patients are sick with symptoms that aren’t easily managed or don’t fit neatly into diagnostic boxes, this often opens up room for skepticism and doubt. I know this firsthand since it happened to me: when my lungs and immune system didn’t respond the way doctors presumed they would, the doctors began to question me. Was I taking mymedication properly? Was I just a stressed out, anxious college student and was that why I couldn’t breathe? I was in the ICU with very low oxygen levels and these were the queries I received.
Other major challenges are all related to this same theme of being medical outliers: funding for research is harder to come by, as are refined diagnostics and effective treatments. We’ve definitely seen a lot of progress on this front in recent years, but less than five percent of rare diseases have FDA approved therapies. It’s a cultural issue as well—no one has heard of what we have, which makes it more difficult to empathize with or understand us.
Toni: I’ve written about how the chronically ill can effectively use the internet (here). I’m curious to know your thoughts about this major change in all of our lives. Has the internet made a difference to you? Have you been able to connect with people with a similar diagnosis? Are there plusses and minuses to using the internet in a medical way?
Laurie: The internet and social media platforms have made an enormous difference for me, and for so many patients with rare and chronic illnesses. In fact, the first thing I did when I was diagnosed was search for patients with PCD online, and found some list-servs and Facebookgroups. Illness can be incredibly isolating, and the internet allows patients to connect and share stories, anecdotal wisdom and advice, and exchange information on providers and treatments. Health 2.0 technologies also allow us to spread information on clinical trials, push for funding, and mobilize in ways geography and health problems might not allow for otherwise.
For all the benefits, drawbacks remain. For examples, experiences that may be extreme examples of disease symptoms or trajectory can get amplified in an “echo chamber” effect, where the same potentially misleading information is repeated as if it is the norm. Personal information may be perceived as medical advice, and patients might adopt treatments that might not be fully vetted for safety or effectiveness. Just because it’s out there doesn’t mean research is reliable, and advocates who may lack the research experience to interpret information may unwittingly misconstrue data. The immediacy of the internet stands contrasts with the pace of academic research and publication, which moves slowly from publication to clinical practice.
There is more and more responsibility on us as patients and as advocates to be discerning in what we read and share.
Toni: You write about the discrepancy in treatment for pain for men and for women. This was eye-opening for me, and it’s crucial for us to try and change this. Can you elaborate on this discrepancy and talk about what measures do you think we can take to change this situation?
Laurie: Women are disproportionately affected by many chronic illnesses, particularly chronic pain conditions, which affect twenty-five percent of Americans. Consider just some of the numbers: women are three times more likely than men to develop autoimmune diseases, two and a half times more likely to develop rheumatoid arthritis, and nine times more likely to be diagnosed with fibromyalgia. As many as 50 million American women live with a neglected pain disorder, that which is poorly understood and poorly researched.
Women are not only more likely to develop certain pain conditions, but they are also more sensitive to pain. Unfortunately, research also shows that women are also more likely to have their symptoms dismissed as emotional (a throwback to “hysterical illness”) and receive less aggressive treatment for physical symptoms when they are treated.
Much work remains to be done in terms of understanding the underlying mechanisms of pain, but research suggests a combination of physiological and hormonal influences are at play. The best way to dispel myths and misconceptions about gender and illness is with facts. Sex-based clinical research is the answer—the more we understand about how men and women experience pain, the better.
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. As such, increased education and awareness about gender and pain and training in pain management will also help health care providers better meet the needs of patients.
Toni: Thanks Laurie. Clearly we have our work cut out for us on this issue. One last question. What prompted you to write a social history of chronic illness?
Laurie: 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 many lingering stereotypes about patients with chronic illness as weak or somehow deserving of their illnesses that I wanted to explore and confront. In the Kingdom of the Sick is a social history of chronic illness in America, because I found it was impossible to separate the experiences of living with physical illness from the culture in which patients live: our beliefs and expectations, our scientific breakthroughs and discoveries, etc. It 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.
Toni: Thank you, Laurie. I’ve enjoyed talking with you and learned so much from this interview.
© 2013 Toni Bernhard
In the Kingdom of the Sick is available at Amazon and Barnes & Noble.
Laurie has an M.F.A. and teaches health and science writing at Northeastern University.Her blog at Psychology Today is called “In the Kingdom of the Sick”
Toni is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at www.tonibernhard.com
Toni: Can you give us some background on your own chronic illness? What is your diagnosis and how long have you been sick?
Laurie: I am a lifelong patient with chronic illness—I have primary ciliary dyskinesia (PCD), a rare genetic lung disorder, bronchiectasis, celiac disease, and other conditions. In patients with PCD, the cilia, the tiny structures that line the respiratory tract and help clear out debris and secretions, don’t work. This leaves us more susceptible to infections, decreased oxygenation, and long-term lung damage.
I’ve been sick since birth, and spent most of my life in and out of hospitals as an inpatient and undergoing many surgeries. I wasn’t diagnosed with PCD correctly until I was 23. Getting the right diagnoses was truly life-changing. Now that I know what I have, I can implement better preventive therapies, like daily chest physiotherapy, and medicine regimens, and my quality of life and productivity have increased dramatically.
Toni: So this is a rare disease and it was hard to get it diagnosed. Can you share with us the unique challenges that people with rare diseases face? Is it common for them to be hard to diagnose? Are people less accepting of them as they are of more well-known diseases? In other words, are people with rare diseases more likely to be dismissed as "all in your head" type patients?
Laurie: Yes, long diagnostic journeys are all too common with rare disease patients. There are almost 30 million Americans who live with nearly 7,000 rare diseases. While a rare disease is one that affects fewer than 200,000 patients, we often make up incredibly small patient pools. This is one of the biggest challenges rare disease patients face, since delays in diagnosis can lead to disease progression.
Unfortunately, I do think rare disease patients can fall under the “it’s all in your head” stigma. When patients are sick with symptoms that aren’t easily managed or don’t fit neatly into diagnostic boxes, this often opens up room for skepticism and doubt. I know this firsthand since it happened to me: when my lungs and immune system didn’t respond the way doctors presumed they would, the doctors began to question me. Was I taking mymedication properly? Was I just a stressed out, anxious college student and was that why I couldn’t breathe? I was in the ICU with very low oxygen levels and these were the queries I received.
Other major challenges are all related to this same theme of being medical outliers: funding for research is harder to come by, as are refined diagnostics and effective treatments. We’ve definitely seen a lot of progress on this front in recent years, but less than five percent of rare diseases have FDA approved therapies. It’s a cultural issue as well—no one has heard of what we have, which makes it more difficult to empathize with or understand us.
Toni: I’ve written about how the chronically ill can effectively use the internet (here). I’m curious to know your thoughts about this major change in all of our lives. Has the internet made a difference to you? Have you been able to connect with people with a similar diagnosis? Are there plusses and minuses to using the internet in a medical way?
Laurie: The internet and social media platforms have made an enormous difference for me, and for so many patients with rare and chronic illnesses. In fact, the first thing I did when I was diagnosed was search for patients with PCD online, and found some list-servs and Facebookgroups. Illness can be incredibly isolating, and the internet allows patients to connect and share stories, anecdotal wisdom and advice, and exchange information on providers and treatments. Health 2.0 technologies also allow us to spread information on clinical trials, push for funding, and mobilize in ways geography and health problems might not allow for otherwise.
For all the benefits, drawbacks remain. For examples, experiences that may be extreme examples of disease symptoms or trajectory can get amplified in an “echo chamber” effect, where the same potentially misleading information is repeated as if it is the norm. Personal information may be perceived as medical advice, and patients might adopt treatments that might not be fully vetted for safety or effectiveness. Just because it’s out there doesn’t mean research is reliable, and advocates who may lack the research experience to interpret information may unwittingly misconstrue data. The immediacy of the internet stands contrasts with the pace of academic research and publication, which moves slowly from publication to clinical practice.
There is more and more responsibility on us as patients and as advocates to be discerning in what we read and share.
Toni: You write about the discrepancy in treatment for pain for men and for women. This was eye-opening for me, and it’s crucial for us to try and change this. Can you elaborate on this discrepancy and talk about what measures do you think we can take to change this situation?
Laurie: Women are disproportionately affected by many chronic illnesses, particularly chronic pain conditions, which affect twenty-five percent of Americans. Consider just some of the numbers: women are three times more likely than men to develop autoimmune diseases, two and a half times more likely to develop rheumatoid arthritis, and nine times more likely to be diagnosed with fibromyalgia. As many as 50 million American women live with a neglected pain disorder, that which is poorly understood and poorly researched.
Women are not only more likely to develop certain pain conditions, but they are also more sensitive to pain. Unfortunately, research also shows that women are also more likely to have their symptoms dismissed as emotional (a throwback to “hysterical illness”) and receive less aggressive treatment for physical symptoms when they are treated.
Much work remains to be done in terms of understanding the underlying mechanisms of pain, but research suggests a combination of physiological and hormonal influences are at play. The best way to dispel myths and misconceptions about gender and illness is with facts. Sex-based clinical research is the answer—the more we understand about how men and women experience pain, the better.
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. As such, increased education and awareness about gender and pain and training in pain management will also help health care providers better meet the needs of patients.
Toni: Thanks Laurie. Clearly we have our work cut out for us on this issue. One last question. What prompted you to write a social history of chronic illness?
Laurie: 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 many lingering stereotypes about patients with chronic illness as weak or somehow deserving of their illnesses that I wanted to explore and confront. In the Kingdom of the Sick is a social history of chronic illness in America, because I found it was impossible to separate the experiences of living with physical illness from the culture in which patients live: our beliefs and expectations, our scientific breakthroughs and discoveries, etc. It 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.
Toni: Thank you, Laurie. I’ve enjoyed talking with you and learned so much from this interview.
© 2013 Toni Bernhard
In the Kingdom of the Sick is available at Amazon and Barnes & Noble.
Laurie has an M.F.A. and teaches health and science writing at Northeastern University.Her blog at Psychology Today is called “In the Kingdom of the Sick”
Toni is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers and How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at www.tonibernhard.com
