Transformation Teaching
Chronic Illness Resources
The resources on this page are constantly growing. Please send any recommendations for inclusion to [email protected]
KOI Community
Illness Information
Redesigning Chronic Illness Care: The Chronic Care Model
CDC: Centers For Disease Control And Prevention
An Unhealthy America: The Economic Burden Of Chronic Disease
Chronic Conditions Among Older Americans (pdf)
The Growing Crisis of Chronic Disease in the United States (pdf)
Chronic Conditions: Making the Case for Ongoing Care (pdf)
Buttorff C., Ruder T., Bauman M. Multiple Chronic Conditions in the United States.
Disease, Illness, Sickness, Health, Healing And Wholeness: Exploring Some Elusive concepts
Chu, Lily, Fuentes, Lynn, Marshall, Olena, Mirin, Art. Accommodations for ME/CFS College Students (useful in other contexts, too)
Fuentes, Lynn. The Chronic Illness Initiative
Supporting College Students with Chronic Illness Needs at DePaul University.
Fuentes, Lynn. Crossing the Bridge
An essay on when to intervene by Lynn Holaday Fuentes.
Fuentes, Lynn. Much to Be Grateful For
The story of a mother’s effort to help her son and a family’s struggle to cope with ME/CFS by Lynn Royster Fuentes.
Bernhard, Toni. When Our Chronically Ill Bodies Say “Rest,” Why Don't We?
Brownlee, Shannon.
When Patients — Not Doctors — Make Medical Mistakes. The Cost of Assuming Doctors Know Best
Savoie, Hillary.
PTSD Helps Parents Keep Their Medically Fragile Children Alive — But At What Cost?
Edwards, Laurie
http://www.laurieedwardswriter.com/select-writing/
New Diagnosis Risks ‘It’s All In Your Head’ Response To Illness
Feelings of Vulnerability, Disempowerment, and Discrimination Common in Children with Epilepsy
Sick Magazine – see forum responses
Shifke, Caroline https://www.huffpost.com/entry/chronic-illness-no-one-knows-whats-wrong_n_5efe1653c5b6ca97091b054a
A sociological critique of alternative medicine: liberation or disempowerment?
Trumzo, Joseph. The best life possible.
Families Living With Chronic Illness and Disability 70.00 copy from google
Relationships:
Changing Relationships, Changing Lives http://caregiveraction.org/changing-relationships-changing-lives
How a Chronic Illness Can Impact a Relationship http://itsnotjustlyme.com/lyme-can-impact-relationship/
Love, Anger and Guilt: Coping With a Child's Chronic Illness https://www.nytimes.com/2001/06/26/health/love-anger-and-guilt-coping-with-a-child-s-chronic-illness.html
Maintaining a Healthy Relationship (with someone with mental illness) https://www.nami.org/Find-Support/Family-Members-and-Caregivers/Maintaining-a-Healthy-Relationship
For Providers - Advice for physicians seeing ME/CFS patients
Chronically Capable. An organization that helps people with chronic illness find flexible work. https://www.wearecapable.org/
Please forward suggested links to [email protected]
- Alzheimer's Disease and Dementia
- Arthritis
- Asthma
- Cancer
- Cerebral Palsy
- Chronic Obstructive Pulmonary Disease (COPD)
- Chronic Pain
- Crohn's Disease
- Cystic Fibrosis
- Diabetes
- Epilepsy
- Fibromyalgia
- Heart Disease
- HIV/AIDS
- Lupus
- ME/CFS
- The Solve ME/CFS Initiative
- The Open Medicine Foundation
- #ME Action
Source: CDC
Date: January 27, 2021
URL: https://www.cdc.gov/me-cfs/resources/patient-toolkit.html
* Could You Have ME/CFS?
https://www.cdc.gov/me-cfs/pdfs/Could-You-Have-MECFS_508.pdf
* Preparing to Discuss ME/CFS with a Healthcare Provider
https://www.cdc.gov/me-cfs/pdfs/First-Visit-MECFS_508.pdf
* On the Day of Your Office Visit for ME/CFS
https://www.cdc.gov/me-cfs/pdfs/During_Visit_508.pdf
* After a Healthcare Provider Visit for ME/CFS
https://www.cdc.gov/me-cfs/pdfs/After-Diagnosis_508.pdf
* Handout: A Healthcare Visit Checklist for ME/CFS
https://www.cdc.gov/me-cfs/pdfs/Checklist-for-Visits_508.pdf
* Current Medications and Supplements List
https://www.cdc.gov/me-cfs/pdfs/Medications_508.pdf
- Mood disorders (Bipolar, Cyclothymic, and Depression)
- Multiple sclerosis
- Muscular Dystrophy (MD) ...
- Myasthenia Gravis
- Parkinson's Disease
- Poliomyelitis
- Scleroderma
- Rheumatoid Arthritis (RA)
- Schizophrenia
Planning and Practical Resources
Spirituality and Growth
Literature and Film
The Children Act with Emma Thompson. Movie (book by Ian McEwan): A 17 year old Jehovah's Witness wants to refuse a life-saving blood transfusion.
Lynn Fuentes. Ph.D. Author of the Koan of Illness approach.
Jennifer Davis, Licensed professional counselor. Integral Coach. See an interview with Jennifer here.
Amy Stenehjem, MD. Health Consultant.
Tim Schneider. Health Coach specializing in Nutrition and Mindfulness. Focus on autoimmune issues. Can also help with social media and video editing. [email protected]
Integral Theory
An Introduction to Integral Theory (more complex)
https://www.integrallife.com/integral-post/integral-path-medicine not on IL yet
Susann Cook-Greuter Nine Levels of Increasing Embrace
Esjborn-Hargens, Sean. An Overview of Integral Theory
Terri O'Fallon - Developmental Coaching
Intersections of Illness and Integral
The Koan of Illness: Empowering Yourself
The Koan of Illness: Healing The Trauma
The Koan of Illness: Healing Your Relationship
The Koan of Illness: Illness as a Path to Personal Growth
The Koan of Illness: Illness as a Path to Spiritual Growth
- Interviews
- Grace and Grit: A Book Review
- An Integral Approach to Illness
-
Lynn's Integral Life module - the first six 6-minute clip is on the quadrants. You will need to belong to integrallife.com to see the subsequent clips.
a. https://integrallife.com/koan-chronic-illness/
Literature and Film on Illness
Berne, Katrina. Running on Empty
Bernhard, Toni. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers
Brownlee, Shannon. Overtreated: Why Medicine is Making Us Sicker and Poorer (economic book of the year in 2008).Chodrin, Pema. When Things Fall Apart
Donohue, Paul J. Ph.D. and Mary E. Sigel Ph.D. Sick and Tired of Being Sick and Tired: Living with Invisible Chronic Illness
Dossey, Barbara. Nurse Coaching
Edwards, Laurie: In the Kingdom of the Sick: A Social History of Chronic Illness in America and Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
Feldman, Lynne. Integral Healing
Fennell, Pat. The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life
Foster, Jeff. Falling in Love with Where You Are.
Documentary: "Out of My Head" chronic migraine.
Illness in Literature and Film
(a few suggestions – find your own and add to our list)
Books (fiction, autobiography)
- Bolte Taylor, Jill. My Stroke of Insight.
- Genova, Lisa. Still Alice
- Blume, Judy. Deenie
- Ishiguro, Kazuo. Never Let Me Go
- Michael Crichton. The Andromeda Strain.
- King, Roger. Love and Fatigue in America
- Bailey, Elisabeth Tova. The Sound of a Wild Snail Eating
- Feldman, Lynn. Integral Healing.
Films
- Girl Interrupted (mental illness)
- One Flew Over the Cuckoo’s Nest (institutions)
- Philadelphia (AIDS – employment)
- Dallas Buyers Club (AIDS, commerce),
- Awakenings (Parkinson’s – medical treatment)
- A Beautiful Mind (mental illness)
- Silver Linings Playbook (mental illness)
- Angels in America (AIDS politics)
- Theory of Everything (Motor Neuron Disease or ALS),
- Away from Her (Alzheimer’s)
- Still Alice (Alzheimer’s)
- 50/50 (cancer and family and friends)
- Why, Charlie Brown, Why? (Janice has leukemia),
- Elephant Man (neurofibromatosis)
- Wit (cancer)
- Dancer in the Dark (degenerative blindness)
- My Left Foot (cerebral palsy)
- Contagion (epidemic)
- Terms of Endearment (cancer)
- This is Where I Leave You (death)
- Philadelphia (HIV/AIDS)
- The Beach (societal attitudes towards disability)
- Breaking Bad (cancer)
- Crazy Sexy Cancer
- The Fountain (cancer)
