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Common Issues in Chronic Illnessand
What You Can Do About Them
American Autoimmune Related Diseases ForumTampa, FL
March 28,2015
Linda RuescherProgram Director
Lupus Foundation of Florida
“Never deny a diagnosis,but DO deny the negative prediction that comes with it.”
Anatomy of an Illness as Perceived by the PatientNorman Cousins
Onset Diagnosis Treatment CureClear Definitive Clear Likely
Acute Illness
Chronic Illness
• Onset-gradual• Diagnosis-difficult• Treatment-trial and error• Cure-rare
Treatment Goals
• Relieve or reduce symptoms• Stop or slow progression• Prevent or minimize damage
Culture Shock
• Inhabitants• Language• Society• Dwellings• Attire• Tools
Acute Chronic
Beginning Rapid GradualCause Usually one ManyDuration Short IndefiniteDiagnostic Tests Often decisive Often uncertain
especially early onTreatment Cure common Cure rareRole of Professional Select and conduct Teacher and partner
therapy Role of patient Follow orders Partner of health
professionals, responsible for daily management
Lorig, Kate et al. Living a Healthy Life with Chronic Conditions, 3rd edition.Bull Publishing Company: Boulder, CO. 2006.
Working with the Natives
The Symptom Cycle
Lorig, Kate et al. Living a Healthy Life with Chronic Conditions, 3rd edition.Bull Publishing Company: Boulder, CO. 2006.
Difficult Emotions
Who are you?
“If you are breathing, there is more right with you than there is wrong.”
Jon Kabat-Zinn Full Catastrophe Living
How sick are you?
• Awareness• Permission• Journal• Create• Get support• Therapy
How can I do this?
“You need to claim the events of your life to make yourself yours.“ Anne Wilson-Schaef
The Artist’s Way Julia Cameron
What makes you feel good?
What do I need to do to take care of myself right now?
Managing Fatigue
• Rest before you are tired• Don’t push• Rest/activity ratio• Talk to your doctor• Other causes of fatigue
DepressionInactivityAnemiaPoor hydrationNutritionPainMedications
Managing Fatigue
Never do for others
that which they are perfectly
capable of doing
for themselves!
New Golden Rule
Language of Letting Go Melodie BeattieMeditations for Women Who Do Too Much Ann Wilson -Schaef
Lists…To do or got it done?
TO DO
Didn’t finish list.
Beats self up.
Feels like a failure.
GOT IT DONE
Did more than I thought.
Pats self on back.
Feels successful.
Mindmapping
If you don’t know where you’re going,Any road will get you there.
-Cheshire Cat
Action PlansBreak goals down into action steps/plans
What will you do? How much will you do? How often will you do it? How long will you do it? How confident are you?
The Power of the Mind
• What you think causes what you feel.• What you feel causes changes in your body.• Changes in your body affect your health.
All that is comes from the mind;
it is based on the mind;
it is fashioned by the mind. -Pali Canon 500-250 B.C.E
You Can’t Afford the Luxury of a Negative Thought: A Book for People with Any Life-Threatening Illness-Including LifeJohn-Roger and Peter McWilliams
Reframing Treatment
Purpose
Counterclockwise Ellen Langer
Everything can be taken from
a man or a woman but one thing:
the last of human freedoms
to choose one’s attitude
in any given set of circumstances,
to choose one’s own way. Viktor E. Frankl
Linda [email protected]
