Perhaps that’s really the distinction that matters: even if we never find cures for what ails us, can we experience healing? If centuries of illness and advancement tell us anything, then the combination of knowledge, collaboration, and empowerment are a start.
Acknowledgments
I’d like to acknowledge my agent, Matthew Carnicelli, for his enthusiasm for this book and for his intellectual and emotional engagement in it. Jackie Johnson, George Gibson, and the great team at Walker Books gave me the time to dig into questions that I didn’t know the answers to but really wanted to find out, and the space to try and make sense of what I discovered. Really, can any nonfiction writer ask for more than that?
This writing process has involved a lot of discussion, research, and reading. Over the course of several years, I’ve been fortunate to have many patients and health care professionals give me their time and insights. This book is unquestionably richer and more complex thanks to these conversations, and I would like to especially acknowledge Cynthia Toussaint, Dr. Sarah Whitman, Melissa McLaughlin, Barbara Kivowitz, Alicia Cornwell, Janet Geddis, Emerson Miller, Dr. Joe Wright, Amy Brightfield, Jennifer Shaw, Dr. Kevin Pho, Dr. Val Jones, Dr. Gwenn O’Keefe, Susan Tannehill, Phyllis Greenberger, Ginger Taylor, Gina Terrasi Gallagher, Duncan Cross, Dr. Barry Popkin, Rosalind Joffe, Tony Chen, Dr. Adriane Fugh-Berman, Caroline Sheehan, Rachel Foster, e-Patient Dave deBronkart, Jennifer Crystal, Britta Bloomquist, Kairol Rosenthal, Leah Roman, Karen Weintraub, Aviva Brandt, and others.
I’d like to thank the intrepid Rebecca Viola for her all her efforts. She is a skilled researcher and a thoughtful reader. Alice Sapienza and Christen Enos also tackled different versions of this manuscript and offered truly helpful feedback.
Numerous books and articles are cited in these pages, but I want to take a moment to acknowledge the writers whose expertise truly informed this manuscript. Susan Sontag’s Illness as Metaphor was the initial spark that set this inquiry in motion years ago: How does language influence the illness experience, and what does the widening scope of chronic illness, despite its somewhat static definition, mean for patients? I am also indebted to the works of Roy Porter, David B. Morris, David J. Rothman, Paula Kamen, and Carl Elliott, among others.
Lastly, I’d like to thank my family and close friends for their contribution to this effort and for their understanding of the idiosyncrasies of a writer’s life. My husband, John, did a lot of reading and even more listening, and my daughter, whose birth and babyhood coincided with the writing of this book, was both a constant source of inspiration and motivation and a most cooperative companion.
Notes
INTRODUCTION
1. “About the Crisis,” Partnership to Fight Chronic Disease, www.fightchronicdis ease.org/issues/about.cfm.
2. “SWHR Timeline,” Society for Women’s Health Research, www.womenshealthresearch.org/site/PageServer?pagename=about_timeline.
3. Porter, The Greatest Benefit to Mankind, 15.
4. Sontag, Illness as Metaphor and AIDS and Its Metaphors, 3.
5. Porter, Greatest Benefit to Mankind, 29.
CHAPTER 1: FROM PLATO TO POLIO
1. Wall, Encounters with the Invisible, 8.
2. Kamen, All in My Head, 90.
3. Sontag, Illness as Metaphor, 6.
4. Partnership to Fight Chronic Disease, “The Growing Crisis of Chronic Disease.”
5. Kamen, All in My Head, 63.
6. Morris, “How To Speak Postmodern,” 1.
7. Ibid., 2.
8. Ibid.
9. Adler, Medical Firsts, 8.
10. Ibid., 9.
11. Ibid., 10–11.
12. Ibid., 11.
13. Porter, Greatest Benefit to Mankind, 56.
14. Bergdolt, Wellbeing, 37–38.
15. Ibid., 38.
16. Ibid., 39.
17. Kennedy, A Brief History of Disease, 28.
18. Ibid.
19. Porter, Greatest Benefit to Mankind, 84.
20. Ibid.
21. Kennedy, A Brief History of Disease, 33.
22. Herek, “Thinking About AIDS and Stigma,” 595.
23. Kennedy, A Brief History of Disease, 76.
24. Porter, Greatest Benefit to Mankind, 122–123.
25. Ibid., 123.
26. Ibid., 125.
27. Ibid., 130.
28. Ibid., 257.
29. Kelly, Medicine Becomes a Science, 1.
30. Ibid.
31. Ibid., 8.
32. Porter, Blood and Guts, 44.
33. Kelly, Medicine Becomes a Science, 12.
34. Sontag, Illness as Metaphor, 14–15.
35. Maugham, “Sanatorium,” 545.
36. Kelly, Medicine Becomes a Science, 24–25.
37. United States Department of Health and Human Services, “The Great Pandemic,” http://1918.pandemicflu.gov/the_pandemic/04.htm.
38. Grob, The Deadly Truth, 264.
39. Porter, Greatest Benefit to Mankind, 15.
40. Ibid.
41. Kelly, Medicine Becomes a Science, 84.
42. Ibid.
43. Grob, The Deadly Truth, 192.
44. Kelly, Medicine Becomes a Science, 85.
45. Porter, Greatest Benefit to Mankind, 277.
46. Grob, The Deadly Truth, 245.
CHAPTER 2: AN AWAKENING
1. Roberts, “The Commission on Chronic Illness,” 296.
2. Ibid., 295.
3. Ibid., 296.
4. Ibid.
5. Sidell, “Adult Adjustment to Chronic Illness,” 6.
6. Joffe, “Is This Duo Doable?”
7. Sidell, “Adult Adjustment to Chronic Illness,” 2.
8. Elliott, Better than Well, 44.
9. Nakazawa, The Autoimmune Epidemic, 24.
10. Ibid., 36.
11. Ibid., 38.
12. Centers for Disease Control and Prevention, “Chronic Disease Overview,” www.cdc.gov/chronicdisease/overview/index.htm.
13. Ibid.
14. Rao, “Looking Back and Looking Forward,” Preventing Chronic Disease.
15. Rothman, Strangers at the Bedside, 51–53.
16. Sontag, Illness as Metaphor, 64–65.
17. National Institutes of Health, “The 1971 National Cancer Act: Investment in the Future,” www.nih.gov/news/pr/mar97/nci-26c.htm.
18. Rothman, Strangers at the Bedside, 1.
19. Ibid., 16.
20. Ibid., 30.
21. Ibid., 15.
22. Ibid.
23. Ibid., 144.
24. NPR, “Remembering the Tuskegee Experiment,” www.npr.org/programs/morning/features/2002/jul/tuskegee/.
25. Centers for Disease Control and Prevention, “The Tusekegee Timeline,” www.cdc.gov/tuskegee/timeline.htm.
26. NPR, “Remembering the Tuskegee Experiment.”
27. Skloot, The Immortal Life of Henrietta Lacks, 4.
28. Rothman, Strangers at the Bedside, 3.
29. National Institutes of Health, “Timeline of Laws,” http://history.nih.gov/about/timelines_laws_human.html#1949.
30. Rothman, Strangers at the Bedside, 155.
31. Lepore, “The Politics of Death,” 64.
32. National Hospice and Palliative Care Organization, “NHPCO Facts and Figures,” 5.
33. Long, “June 11, 1985: Karen Ann Quinlan Dies,” www.wired.com/science/discoveries/news/2008/06/dayintech_0611.
34. Lepore, “The Politics of Death,” 66.
35. Centers for Medicare and Medicaid Services, “Tracing the History of CMS Programs,” 1.
36. Ibid., 3–4.
37. Daaleman, “Reorganizing Medicare.”
38. Centers for Medicare and Medicaid Services, “Tracing the History of CMS Programs,” 5.
39. Rothman, Strangers at the Bedside, 11.
CHAPTER 3: DISABILITY RIGHTS, CIVIL RIGHTS, AND CHRONIC ILLNESS
1. Wendell, “Unhealthy Disabled,” 19.
2. Ibid., 21.
3. Ibid., 25.
4. Goffman, Stigma: Notes On the Management of Spoiled Identity, 4.
5. Disability Rights and Independent Living Movement, “Introduction,” http://bancroft.berkeley.edu/collections/drilm/introduction.html.
6. King, Pink Ribbons, Inc., 106.
7. Quigley, “Hospitals and the Civil Rights Act of 1964,” 455.
8. Ibid., 457.
9. Hoffman, “Health Care Reform and Social Movements,” 80.
10. Disability Rights and Independent Living Movement, “Timeline,” http://bancroft.berkeley.edu/collections/drilm/resources/timeline.html.
11. Barnartt and Scotch, Disability Protests, 18.
12. Rothman, Stranger at the Bedside, 205.
13. Disability Rights and Independent Living Movement, “Timeline.”
14. Minnesota Statewide Independent Living Council, “A Chronology of the Disability Rights Movements,” www.mnsilc.org/chronology.htm.
15. NPR, “A Look Back At ‘Section 504,’” www.npr.org/programs/wesun/features/2002/504/.
16. Disability Rights and Independent Living Movement, “Timeline.”
17. Ibid.
18. Wendell, “Unhealthy Disabled,” 31.
19. Ibid.
20. Disability Rights and Independent Living Movement, “Timeline.”
CHAPTER 4: THE WOMEN’S HEALTH MOVEMENT AND PATIENT EMPOWERMENT
1. Kamen, All in My Head, 98.
2. Gilman, “The Yellow Wallpaper,” www.library.csi.cuny.edu/dept/history/lavender/wallpaper.html.
3. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 17.
4. Kaysen, The Camera My Mother Gave Me, 63.
5. Ibid.
6. Barnartt and Scotch, Disability Protests, 20.
7. Womenshealth.gov, “Infertility: Frequently Asked Questions,” www.womenshealth.gov/faq/infertility.cfm#b.
8. American Autoimmune Related Diseases Association, “Autoimmunity: A Major Women’s Health Issue,” www.aarda.org/women_and_autoimmunity.php.
9. Ibid.
10. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 9.
11. Hoffman, “Health Care Reform and Social Movements,” 75.
12. King, Pink Ribbons, Inc., xiii.
13. Morgen, Into Our Own Hands, x.
14. National Organization for Women, “NOW FAQs,” www.now.org/organization/faq.html#found.
15. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 3.
16. Ibid., 19.
17. Morgen, Into Our Own Hands, 4.
18. Morgen, Into Our Own Hands, 4–5.
19. Ruzek, “Transforming Doctor-Patient Relationships,” 182.
20. Ibid.
21. Rothman, Strangers at the Bedside, 144.
22. Ibid., 143.
23. Ibid.
24. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 3.
25. Ibid.
26. Boulis and Jacobs, The Changing Face of Medicine, 2.
27. Morgen, Into Our Own Hands, 129.
28. Ibid., 4–5.
29. Ibid., 122.
30. Hoffman, “Health Care Reform and Social Movements,” 80.
31. Kamen, All in My Head, 98.
CHAPTER 5: CULTURE, CONSUMERISM, AND CHARACTER
1. “The Denver Principles,” http://actupny.org/documents/Denver.html.
2. Ibid.
3. Sidell, “Adult Adjustment to Chronic Illness,” 5.
4. Kerson, Understanding Chronic Illness, 32.
5. King, Pink Ribbons, Inc., 48.
6. Elliott, Better than Well, xvii.
7. King, Pink Ribbons, Inc., 48.
8. Elliott, Better than Well, 61.
9. Boehmer, The Personal and the Political, 12.
10. Frontline, “25 Years of AIDS,” www.pbs.org/wgbh/pages/frontline/aids/cron/.
11. Ibid.
12. Ibid.
13. Herek, “Thinking About AIDS and Stigma,” 595.
14. Ibid., 596.
15. Hoffman, “Health Care Reform,” 81.
16. Boehmer, The Personal and the Political, 3.
17. The Body, “A History of the People With AIDS Self-Empowerment Movement,” www.thebody.com/content/art31074.html?ts=pf.
18. “The Denver Principles,” http://actupny.org/documents/Denver.html.
19. King, Pink Ribbons, Inc., 121.
20. Ratcliff, Women and Health, 105.
21. Susan G. Komen for the Cure, “Breast Cancer Statistics,” ww5.komen.org/BreastCancer/Statistics.html#US.
22. Kedrowski and Sarow, Cancer Activism: Gender, Media, and Public Policy, 20.
23. Ibid., 21.
24. Ibid.
25. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 31.
26. Khan, “Susan G. Komen Apologizes,” http://abcnews.go.com/blogs/politics/2012/02/susan-g-komen-apologizes-for-cutting-off-planned-parenthood-funding/.
27. Kedrowski and Sarow, Cancer Activism: Gender, Media, and Public Policy, 24.
28. Ibid., 25.
29. Ibid.
30. Boehmer, The Personal and the Political, 25.
31. King, Pink Ribbons, Inc., xx.
32. Ibid., 49.
33. Ibid., xxiii.
34. Susan G. Komen for the Cure, “United Against Breast Cancer,” 6–9.
35. Sulik, “Enter the Komen Bandits,” http://gaylesulik.com/?p=8813.
36. King, Pink Ribbons, Inc., 122.
37. Rosenthal, Everything Changes, 7.
38. Wall, Encounters with the Invisible, 209.
39. Ibid., xvii.
40. Ibid.
41. Huibers and Wessely, “The Act of Diagnosis,” 3.
42. Ibid.
43. Wall, Encounters with the Invisible, 9.
44. Strauss, “History of Chronic Fatigue Syndrome,” 3.
45. Ibid., 5.
46. Klonoff, “Chronic Fatigue Syndrome,” 182.
47. Centers for Disease Control and Prevention, “CFS Case Definition,” www.cdc.gov/cfs/general/case_definition/index.html.
48. Wall, Encounters with the Invisible, 24.
49. Tuller, “Chronic Fatigue Syndrome and the CDC,” www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale.
CHAPTER 6: A SLIGHT HYSTERICAL TENDENCY
1. Tuller, “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu,’” www.nytimes.com/ref/health/healthguide/esn-chronicfatigue-ess.html.
2. Morris, The Culture of Pain, 20.
3. American Pain Foundation, “The Problem with Pain,” www.painfoundation.org/get-involved/problem-with-pain.html.
4. Chronic Pain Research Alliance, “Women in Pain,” 3.
5. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 2.
6. Society for Women’s Health Research, “SWHR Timeline,” www.womenshealthresearch.org/site/PageServer?pagename=about_timeline.
7. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 14.
8. Society for Women’s Health Research, “SWHR Timeline.”
9. Ibid.
10. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 33.
11. Society for Women’s Health Research, “SWHR Timeline.”
12. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 4.
13. Ibid., 33.
14. Ibid.
15. Hoffman and Tarzian, “The Girl Who Cried Pain,” 21.
16. Ibid.
17. Chen et al., “Gender Disparity in Analgesic Treatment,” 416.
18. Tuller, “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu.’ “
19. Thernstrom, The Pain Chronicles, 8.
20. Medicalnewstoday.com, “More Difficult for Doctors to Diagnose Complex Sources of Pain,” www.medicalnewstoday.com/releases/71607.php.
21. Morris, The Cult
ure of Pain, 4.
22. ScienceDaily.com, “Chronic Fatigue Syndrome Not Linked to XMRV,” www.sciencedaily.com/releases/2011/05/110504151337.htm.
23. Cohen, “Updated: In a Rare Move, Science without Authors’ Consent Retracts Paper,” http://news.sciencemag.org/scienceinsider/2011/12/in-a-rare-move-science-without-a.html#.TyM7mf8EZP4.mailto.
24. U.S. Department of Health and Human Services, “A Century of Women’s Health,” 16.
25. Marts and Resnick, Society for Women’s Health Research, “Scientific Report Series,” 1.
26. Ibid., 6.
27. Ibid.
28. Ibid.
29. Ibid., 4.
30. Fillingim et al., “Sex, Gender, and Pain,” www.sciencedirect.com/science/article/pii/S1526590008009097.
31. Greenberger, “Why One Size Doesn’t Fit All,” www.boston.com/bostonglobe/editorial_opinion/oped/articles/2009/02/23/why_one_size_doesnt_fit_all_in_medicine/.
32. Chronic Pain Research Alliance, “Women in Pain,” 9.
33. Institute of Medicine Report Brief, “Relieving Pain in America,” 2–3.
34. Ibid., 3.
35. Thernstrom, The Pain Chronicles, 8.
CHAPTER 7: INTO THE FRAY
1. Aronowitz, “Lyme Disease,” 97.
2. Ibid., 100.
3. Centers for Disease Control and Prevention, “Surveillance for Lyme Disease,” www.cdc.gov/mmwr/preview/mmwrhtml/ss5710a1.htm.
4. Infectious Diseases Society of America, “Frequently Asked Questions,” www.idsociety.org/lymediseasefacts.htm.
5. Fox, “The Social Life of Health Information,” 5.
6. Ibid.
7. Feder et al., “A Critical Appraisal of Lyme Disease,” 1428.
8. Ibid., 1422.
9. Grann, “Stalking Dr. Steere over Lyme Disease,” www.nytimes.com/2001/06/17/magazine/17LYMEDISEASE.html.
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