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

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
  • 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]

 

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)
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