Laurie Edwards > Quotes

“It’s hard to see your peers doing things with their lives that you want to be doing with yours, and to know that you’re just not physically capable of doing those things right now—or might never be.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“Since our society is one that places a high premium on hard work, status, and achievement, this is not unexpected. If you break down and report your pain symptoms but they do not improve and your quality of life deteriorates, you are a failure as a patient and as a productive member of society.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“Widespread pain conditions like fibromyalgia or chronic fatigue syndrome are especially social conditions, since their symptoms have a direct impact on a patient’s ability to maintain various roles and identities. Ties to the outside world via employment, family obligations, activities and hobbies, and social engagements are whittled away, and physical and psychosocial isolation increases.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“The fact that you’re just not going to get better seems unbelievable to most people, I guess,” says Melissa McLaughlin. One frustration for her is people who can’t understand that patients cannot control or fix everything. “It’s easier for them to believe that there is something you can control … There must be something you can do that you aren’t doing!”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“I would say the biggest bias I confront with the disease is my own. I was/am embarrassed to admit to anyone that I have …”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“A survey taken by the association found that 45 percent of patients with autoimmune disease were labeled as chronic complainers early in their diagnostic journeys, with the resulting delay in diagnosis often leading to organ damage from lack of appropriate treatment.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“it creates an expectation that we should conform to the norms for healthy persons.” “To tell somebody with active Crohn’s or lupus or even diabetes that they’re expected to behave like someone without that disease is absurd and cruel,” Cross says. “And we do it simply because we’re afraid of the stigma associated with the label ‘disabled.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“when I am unusually stressed, worried, or overworked and I don’t sleep well and I push myself beyond my limits, my infections last longer, my oxygen saturation isn’t as good, and my energy is strained.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“Physicians revealed that they considered their patients’ weight problems to be primarily a behavioral issue, brought on by overeating and inadequate exercise.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“I asked myself, what’s my purpose now? How can I lead a productive life if I’m too sick to work or make contributions to society? Over time, I learned that meaningful contributions can be made even from bed (especially as a writer); that purpose goes much deeper than a job; that it’s possible to create a new normal for oneself. My life isn’t normal by most people’s standards, but it works for me. I’m living now, not just surviving, and that’s a blessing,” Crystal says.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“I can’t help but wonder if the divisions wouldn’t be so dramatic and the social media fallout so contentious if, in those initial encounters in exam rooms and hospitals, in those first exchanges of Internet research and queries, patients and parents felt more supported, and physicians felt less besieged. The ingredient that seems to be missing so often is collaboration.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“That’s improbable to many people. People assume patients are just complaining too much, not trying their best to get better,”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“millions live with illnesses that aren’t merely “invisible” to others but are not easily identified in laboratories or imaging centers, either. For as many technological and lifestyle resources as we have at our disposal, for as “good” as our health is compared to centuries past, larger numbers of us are sick.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“The unpredictability of symptoms and their severity that sets chronic illness apart from certain physical disabilities can also make for “unreliable activists,” individuals who might be able to run workshops or attend policy meetings one day and be bedridden the very next.3”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“For me, personally, and maybe for others, I think the [disability rights] movement also provided a vocabulary that I can use to talk about the place of chronically ill people in society,” he says.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“use the word ‘slacktivism’ to characterize the first”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“As patient narrative, research, and history will illustrate, gender remains an incredibly important variable in the chronic illness experience. Partly, this is because more females than males manifest chronic and autoimmune conditions. However, throughout history, deeply ingrained ideas about women as unreliable narrators of their pain and symptoms, as weaker than men, and as histrionic or otherwise “emotional” have had a profound impact on their ability to receive accurate diagnoses and appropriate care. On”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“We want to feel better, even if that does not include a cure. We want to feel respected by the fast-paced society we live in, and we want to feel respected by the health care professionals whose job it is to provide the best health outcome possible.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“engage in physical activities, keep up with a regular”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“One frustration for her is people who can’t understand that patients cannot control or fix everything. “It’s easier for them to believe that there is something you can control … There must be something you can do that you aren’t doing! Eating raw foods, forcing yourself to exercise, thinking your way out of it, trying the latest drugs that promise a cure in their commercial: something should work, and if you’re not better, then you’re not working hard enough.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“their conditions coupled with not being able to work and losing social relationships is what increases their stress and depression.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“However, just as legislation was but one part of the larger social adaptation toward people with disabilities back then, shifts in attitudes and associations are still needed to bridge the chronic-illness gap.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“It wasn’t just another infection, another setback, another disruption. It wasn’t going to go away.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“Without that finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases, no backdrop of success with which outsiders can judge our journey. Our survival is more subtle and nuanced; it entails adaptation and negotiation, and is as fluid as our disease progression and symptoms are.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“patients who are quick to claim that their pain and “battle scars” are worse than those of other patients are an unfortunate reality in waiting rooms, support groups, and Internet forums. Both scenarios create internal divisions that weaken one of the greatest assets patients have in a healthy world: the solidarity of the illness experience.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“In fact, I think this is the most daunting aspect of any chronic illness, whether you are the patient grappling with a diagnosis or a healthy person who hopes it never happens to”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“disease. Or so says Pfizer in a new television advertising campaign for Lyrica, the first medicine”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“most doctors are programmed to diagnose, heal, or say good-bye.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“People want to stand out for professional and personal accomplishments, and most are loath to be noticed for what is perceived to be wrong with them.”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America

“powerful cultural forces as gender, religion, and social class … Even when it just grinds on mercilessly, pain, like love, belongs among the basic human”
― Laurie Edwards, In the Kingdom of the Sick: A Social History of Chronic Illness in America