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WASHAA Webinar SeriesInsider Tips for Navigating Chronic Illness
October 12, 2017
Allison Fine, MSW, LICSWFounder and Executive Director
www.thecenterforchronicillness.org
Living with Chronic Illness:
A Case Study Sally is a 40 year old woman with chronic fatigue
syndrome (CFS). She eats a healthy diet and exercises
when she is able. Sally struggles with fatigue and has
difficulty sleeping through the night. She can't get through
the workday and has recently gone down to part-time.
Sally longs for the days before she was sick. She feels no
one understands what she's going through. No disease
modifying treatments are available for CFS at this time,
and Sally worries what will happen if her CFS worsens.
Living with Chronic Illness:
The Numbers
117 million people were living with at least one chronic
illness as of 2012
54 million adults live with arthritis, the most common
cause of disability
27% of invisible illness sufferers see more than 10
doctors before they are diagnosed
7 out of 10 deaths are caused by chronic disease or
complications of chronic disease
Living with Chronic Illness:
Overview No known cause or cure
Can be diagnosed at any
age
Autoimmune, hereditary
Flare-ups / Exacerbations
or remissions
Treatment options
Visible vs. invisible
Cultural differenceshttps://www.pinterest.com/pin/715227984544172584
Living with Chronic Illness:
Myths
They have control over how they feel
If someone would just take _____ supplement, rest more,
exercise more, pray more, etc...
They are sick all the time
They shouldn't be having “fun” or “good days”
Only geriatric patients live with health challenges
Chronic illness is hopeless, and there's nothing I can do
about it
Living with Chronic Illness:
Physical Symptoms
www.shereebradfordlea.com/Cartoonweek42.html
Living with Chronic Illness:
Cognitive and Affective Symptoms
www.optimallivingdynamics.com
Coping with Chronic Illness:
A Case Study Michael is a 75 year old man living with Parkinson's
disease. He was diagnosed just a year ago, but has had
symptoms for a few years, including a tremor in his right
hand. Michael lives with his wife, Esther in their retirement
community. She worries he has been withdrawing from
his favorite activities recently and has been snapping at
her for no reason. Michael's best friend also died last year
after a battle with cancer.
Coping with Chronic Illness: Grief
and Loss
Coping with Chronic Illness:
Depression
Sadness, loneliness, anger, irritability, loss of interest in
daily activities, apathy, sleep changes, appetite changes,
loss of energy, negative thinking patterns, self-loathing,
difficulty concentrating or focusing, hopelessness, reckless
behavior, suicidal thoughts/actions
A common symptom of many chronic illnesses
Risk factors – history or family history of depression, history
of alcohol or drug use
Coping with Chronic Illness:
Anxiety
Worried
Afraid
Restless
Tense
Sweating
Heavy breathing or
Increased heart rate
GI trouble
Fear and worry over
what's happened or
what's to come
Types of worries
(Medical, Financial,
Social)
May be part of the
diagnosis or a reaction
Coping with Chronic Illness: Stress
and Other Environmental Factors
Stress Financial concerns Pre-existing medical or psychological concerns
Strained relationships Poor self-care Lack of support
Managing Chronic Illness:
A Case Study Margo is a 50 year old woman living with Crohn's
disease. Margo had a bowel resection four years ago
and takes medication regularly. She has days where
she feels great and other days when she doesn't.
Margo works and volunteers at her children's school.
She swims at the community center pool twice per
week, and manages her diet and sleep habits. She
enjoys spending time with her husband and two
children.
Managing Chronic Illness:
Western Medicine
Medical Professionals:
Primary Care vs. Specialists, Nurses,
Psychologists, Social Workers, PT,
OT, & ST
Treatments: medications for
symptom management and/or
disease modifying therapies
Surgery
Managing Chronic Illness:
Alternative Medicine
National Center for
Complementary and Alternative
Medicine (NCCAM) divides into
Whole Medical Systems, Mind
Body Medicine, Biologically Based
Practices, Manipulative and Body
Based Practices, and Energy
Medicine
ADLs
Practice self-
compassion,
mindfulness, meditation
Exercise
Eat a healthy diet
Practice good sleep
hygiene
Adjust expectations
Managing Chronic Illness:
Self-care strategies
Set boundaries
Avoid toxic people
Spend time with loved
ones
Change your scenery
Be careful where you
get your information
Journal
Be creative
Managing Chronic Illness: Support
Family
Friends
Coworkers / Colleagues
Counselors / Therapists Support Groups (Self-led
vs. Professionally-led) Crisis Clinic (Crisis Line
and 211 Community Resources)
Managing Chronic Illness:
Resources Chronic Illness Organizations (Center for Chronic
Illness, NMSS, ALS Association, Crohn's and Colitis
Foundation, etc.)
Advocacy Organizations (i.e. WASHAA, Northwest
ADA Center)
Chronic Illness Tools (WATAP, Sight Connection)
Medication assistance programs (NeedyMeds,
Pharmaceutical companies, etc.) Community Centers (Senior Services, YMCA/YWCA,
neighborhood centers)
Center for Chronic Illness (CCI)
Founded in 2016
Staff, board, volunteers
Free!
Professionally-led
support groups
Educational talks and
other events
Future programs
Living with Chronic
Illness
Living Mindfully
with Chronic Illness
Caring for Chronic
Illness
Living with Rare
Chronic Illness
Center for Chronic Illness
Support Groups
Resources Center for Chronic Illness - www.thecenterforchronicillness.org
Cancer Lifeline – www.cancerlifeline.org
The Mighty – www.themighty.com
PatientWorthy – www.patientworthy.com
Global Genes – www.globalgenes.org
NORD – www.rarediseases.org
Some1LikeYou - www.some1likeyou.com
Washington Assistive Technology Act Program – www.watap.org
Sight Connection - www.sightconnection.org
Center for Mindful Self-Compassion – www.centerformsc.org/practice-msc/guided-meditations-and-
exercises
UC San Diego Center for Mindfulness -
www.health.ucsd.edu/specialties/mindfulness/programs/mbsr/Pages/audio.aspx
Pharmaceutical Assistance Programs - www.medicare.gov/pharmaceutical-assistance-program/
Partnership for Prescription Assistance - www.pparx.org
NeedyMeds - www.needymeds.org
Rx Assist - www.rxassist.org
Centers for Disease Control and Prevention - https://www.cdc.gov/chronicdisease/overview/index.htm
Partnership to Fight Chronic Disease -
http://www.fightchronicdisease.org/sites/default/files/docs/GrowingCrisisofChronicDiseaseintheUSfacts
heet_81009.pdf
Questions & Answers
Thank You!
• We welcome your feedback! You will be redirected to a brief survey after the webinar.
• Questions? Comments? Contact WASHAA at [email protected]
• Allison Fine, MSW, LICSW, Founder & Executive Director, www.thecenterforchronicillness.orginfo@thecenterforchronicillness.org
(425) 296-2705
