Chronic Invisible Illness


Joy H. Selak and Dr. Steve Overman

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It is an exciting time for American health care. The passage of the Affordable Health Care Act in 2010 offers coverage to more Americans and places a priority on best practices going forward. In You Don’t LOOK Sick! we asked Dr. Bob Crittenden to contribute an article about how this law would affect care for the chronically ill, which he titled ‘In the Eye of the Storm’. He writes:

“The challenge we have is to make this high quality and affordable care available to everyone in the country. We need to align our goals, incentives, systems, and providers so we are all focused on making the patient experience and quality care our prime focus. We all need to have the same goal. We need to take the best practices, encourage their continual improvement, and do all we can to move those best practices into use by many dif­ferent providers and groups. No one size fits all, but we need to identify the best care for the people in a system or community. We need to develop a system that can make appropriate changes quickly, test those changes and refine them, and continually improve.

“The largest change in health policy for the past 50 years—the Affordable Care Act—is an opportunity, but any large change of this type cannot be successful if left only to policy makers, health insurers, and health care professionals. The people who have the biggest stake in the potential changes are those with chronic dis­eases. We know these changes can work, but only if patients get a place at the table and ensure that the changes work for all of us.”

We offer below links of essays, article, books and blogs that we find of particular interest and help as we address these challenges. If you have something to add, please let us know at joy@joywrites.com.


Essays and Articles

 


The New York Times begins a series Paying Till It Hurts, June 2, 2013. The series will address the high cost of medical encounters and how they contribute to health care spending in the United States. The first is Colostomies Help Explain a $2.7 Trillion Medical Bill:

http://www.nytimes.com/2013/06/02/health/colonoscopies-explain-why-us-leads-the-world-in-health-expenditures.html?ref=todayspaper&_r=0

 

Common sense advice from authors on making choices to build a better life with chronic illness.
http://www.psychologytoday.com/blog/turning-straw-gold/201301/5-tough-choices-you-face-when-chronically-ill-or-in-pain

http://psychcentral.com/blog/archives/2013/04/02/living-a-full-life-with-chronic-illness/

 

In Dr. Overman's recent blog, http://livingwellwithselakoverman.wordpress.com, he reports that better chronic illness care includes reducing stress in the lives of physicians and patients.  Recent articles in EveryDay Health and from the American Psychological Association support this position.

http://www.everydayhealth.com/depression/health-care-system-needs-to-do-more-to-help-stressed-americans-1040.aspx

http://www.apa.org/news/press/releases/stress/2012/report-summary.aspx

 

A growing number of articles are being written now about lowering health care costs for the chronically ill, not through reducing benefits to patients, or payments to physicians, but by better coordinating care, using smarter technology and helping patients engage in better decision making and self care. Some recent ones are cited below.

http://studentmedia.uab.edu/2013/01/reduce-healthcare-costs-through-strong-partnerships/

http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/

http://minnesota.publicradio.org/display/web/2013/01/09/health/unitedhealth-report

http://www.shopfloor.org/2013/01/patient-centered-health-care-modernizing-health-care-through-technology/27260

http://www.dailyfinance.com/2013/01/14/aetna-health-quality-partners-see-fewer-admissions/

Massachusetts CFIDS/ME & FM Association, The Affordable Health Care Act: How it Will Unfold. An update of Affordable Health Care events of 2012 to keep chronically ill patients abreast of changes and developments. 

http://www.masscfids.org/resource-library/25/430

Reuters, US, Health, Frederick Joelving, August 21, 2012, Nearly Half of US Doctors Struggle with Burnout:Study. A study of over 7000 doctors find they have higher burnout rates than any other profession, affecting their own lives and their patients. 

http://www.reuters.com/article/2012/08/21/us-doctors-burnout-idUSBRE87J0RJ20120821

Centers for Disease Control and Prevention: Chronic Diseases and Health Promotion. Excellent summary of incidence and causes of chronic illness by the CDC.

http://www.cdc.gov/chronicdisease/overview/index.htm

The New York Times, Reed Abelson, January 13, 2012. An article on the reasons and regulations around rising medical insurance premiums in spite of stable costs of care.

http://www.nytimes.com/2013/01/06/business/despite-new-health-law-some-see-sharp-rise-in-premiums.html?pagewanted=all&_r=0

The Washington Post, Ezra Klein, March 2, 2012. An article on the finding that Americans pay more for health care because we are charged more than citizens in other countries for the same products and services.

http://articles.washingtonpost.com/2012-03-02/business/35449534_1_higher-prices-health-care-services-health-care-costs

Los Angeles Times Opinion, Palav Babaria, December 14, 2012. A sympahtetic physician writes of the realities of an uninsured cancer patient who lived in the wrong country to allow him to offer care.

http://www.latimes.com/news/opinion/commentary/la-oe-babaria-obamacare-insurance-exchanges-20121214,0,5044611.story


On Line Newsletters

Pain Medicine News: An independent newsletter for Pain Management, www.painmedicinenews.com


Videos

See this interview with Dr. Eric Topol on MSNBC. He discusses The Future of Wireless Medicine.

http://www.msnbc.msn.com/id/21134540/vp/50582822#50582822

In this TED Talk, A Doctor's Touch, September, 2011, Abraham Verghese discusses the importance of touch and ritual in the physician/patient relationship.  

http://www.ted.com/talks/abraham_verghese_a_doctor_s_touch.html


Blogs and Forums

Interesting blog in the Huffington Post about the challenges of providing quality chronic illness care in Canada.

http://www.huffingtonpost.ca/tim-hudak/tim-hudak-health-care_b_2727956.html

The AARP Personal Health Blog helps the 50+ community stay current with health news and issues, including fitness tips, services, info and more.

http://blog.aarp.org/category/personal-health

New York Times blogger Ezekiel Emanuel offers a straightforward discussion on providing compassionate care for dying patients.

http://opinionator.blogs.nytimes.com/category/ezekiel-j-emanuel  

A website with blog and forum founded by Jenni Prokopy in 2005 for women who want to live well with chronic illness.

http://www.chronicbabe.com 

A blog, forum and resource site for younger women living with chronic illness.

http://Sympathomimetic.wordpress.com

Sympathomimetic is an informal and informative site from Darcy Izard, a nursing graduate student at Columbia. She writes for patients and professionals who want more information on pharmacology, or how drugs work.

 


Books

 

In the Kingdom of the Sick: A Social History of Chronic Illness in America, by Laurie Edwards, Walker Publishing, April 2013. This profile from USA Today on Edwards book offers explanations for why the chronically ill, especially women, continue to be stigmatized: http://www.usatoday.com/story/news/nation/2013/04/10/kingdom-sick-chronic-illness/2067779/

My Grandfather's Blessings: Stories of Strength, Refuge and Belonging, Rachel Naomi Remen, Riverhead Trade, 2001.

Remen, a cancer physician and master storyteller, uses her muminous stories to remind us of the power of our kindness and the joy of being alive.

Critical Condition: How Health Care in America Became Big Business and Bad Medicine, Donald Bartlett and James Steele, Doubleday, 2004.

These Pulitzer prize winning investigative journalists reveal how health care in America operates and how it got that way. 

How to Be Sick. A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers, Toni Bernhard, Wisdom Publications, (September 2010)

Bernhard, a former law professor who became ill in her prime, origination and the four noble truths help her cope with limited energy and frequent enforced solitude.

Sick and Tired of Feeling Sick and Tired, Paul J. Donoghue and Mary Elisabeth Siegel, W. W. Norton & Company (July 2000)

This self-help book by two PhD psychologists (one of whom suffers from multiple sclerosis), is an explication of what it means to live with an invisible chronic illness and offers advice and guidance to patients.

Critical: What we Can Do About the Health Care Crisis, Tom Daschle, St. Martin's Press, 2008.

An insightful analysis of our current health care system and what we can do to improve it. Daschle's informed opinions provided much insight and sensible options for change. 

Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards, Walker & Company; First Edition (June 2008)

Edwards cites real lives to illuminate such matters as the pitfalls of explaining rare and/or invisible illnesses and addressing the financial downside of chronic illness. She offers flexible approaches to enabling young, chronically ill workers to stay in the workforce. She is a patient with multiple diagnoses, primarily a genetic respiratory disease.

The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life, Patricia Fennell, New Harbinger Publications, (1st edition October 2001)

Based on her own research, Fennell offers a coping model that readers can use to navigate the physical, psychological, and social effects of their illness. The author identifies four phases of chronic illness and describes skills to manage each phase.

Chronically Happy: Joyful Living in Spite of Chronic Illness, Lori Hartwell, Poetic Media Press (October 2002)

This book is a tool to shape a life with chronic illness using anecdotes and workbook-style exercises. The author covers a range of subjects from dating, to working, to building self-esteem and deepening relationships. Hartwell is a kidney patient who has endured both dialysis and multiple transplants.

Just Fine: Unmasking Concealed Chronic Illness and Pain, Carol Sveilich, Avid Reader Press, (September 2004)

Sveilich, a counselor, interviewed and photographed people who live with a wide variety of concealed disorders. She explores the juxtaposition of looking one way while feeling another with numerous medical and mental health professionals.

A Delicate Balance: Living Successfully With Chronic Illness, Susan Milstrey Wells, Da Capo Press (July 2000)

Wells is a patient with multiple diagnoses, including interstitial cystitis and fibromyalgia. She offers a mix of useful information and real-life stories. The book includes advice on finding a doctor, accepting illness, working with a chronic disease, maintainingrelationships and searching for both conventional and alternative treatments.