MAIS 5320 sec 001 #85082 Thursday 4-6:45 Susan Chizeck, Ph.D.

, CMSW

Chronic Illness: Policy and Experience -- course description

This course will look at chronic illness: medical facts, social and policy issues, and the psychology of
coping with chronic illness. This course is a high participation course. Students will be giving
presentations and participating in class discussions. Students will each choose a chronic illness and a
policy or other issue to become expert in and present their findings. If there is a large enrollment,
students will work in groups. Grading will be based on presentations, participation, and a series of short
article reviews on current issues. The focus is on the student developing expertise in several areas, and
sharing what they have learned with the class.

The theme of the course is how the narrative aspects of people’s experiences with chronic illness
intersects with the current American medical system. What is it like to live with a particular disease?
We will be looking for areas of dysfunction and how the system could better serve the needs of those
with chronic illness. How do people negotiate a system where the ill are devalued and stigmatized?
What if you don’t look sick? Do we have to think positively or is complaining ok? We will look at advice
about how to cope with a life with chronic illness, and see how helpful they are. I expect we will have
guest speakers who will talk about their lives with illness, medical issues, and coping skills that have
helped them.

Each student will do readings in their areas of expertise. The class as a whole will read excerpts from
the following books (tentative list):

Tuesdays with Morrie, Mitch Albom, NY, NY: Broadway books, 1997 or 2007 edition. (accelerated view
of many of the issues with chronic illness)

Health, Illness, and Healing by Kathy Charmaz and Debora Paterniti, eds, Los Angeles, CA: Roxbury
Publishing 1999. (edited set of readings)

Insomniac, Gayle Greene, Berkeley: Univ. of California Press, 2008. (highlights most of the issues with
chronic illness by dealing with primary insomnia)

Topical areas will be chosen by the class, and will come from the following and other issues:

1. Epidemiology of chronic illness

2. Meaning of illness in our society: work, relationships
3. Accounts of health
a. Medical encounter
i. The medical visit
4. Narratives of illness: becoming ill
a. How do we know we are ill?
b. Difficulties of diagnosis – how many years does it take?
c. Experience of illness and pain
d. Stigma of illness and disease
 e. How sick do you have to look?
5. Negotiating the system
a. Health insurance and its frustrations
b. No health insurance, public welfare
c. Getting disability designation
6. Medical personnel and their roles
a. Doctors
i. Doctor/ patient relationships
b. Nurses
c. Alternatives
d. Caregivers
7. Health care settings for illness: hospitals, nursing homes, assisted living
8. Social disparities in health: race, sex, ethnicity, poverty
9. Comparative health systems – is it better in other countries?
10. Research:
a. Funding of research
b. Publishing results
c. Dissemination into health system
11. Coping issues
a. Death of old self
b. Renegotiating self concept
c. Good and bad days
i. Adapting to illness and pain
d. Futurecast, healthy survivor
e. Stress management
f. Physical and mental strategies for health
12. Policy and reform

13. Diseases (some examples students will pick from)

a. Eyes
i. Glaucoma, macular degeneration
b. Ears
i. Tinnitus, hyperacusis
ii. Hearing loss
c. Neurological
i. MS, myasthenia gravis, ALS
ii. Traumatic brain injury
iii. Epilepsy
iv. narcolepsy
d. Migraines and chronic headaches
e. Metabolic
 i. Diabetes
ii. Phenylktetonuria and tyrosenemia
iii. Chron’s, celiac disease
f. Movement: Dystonia, parkinson’s, essential tremor
g. Arthritis (RA and osteo)
i. lupus
h. Kidney, liver
i. Lungs: CPOD, emphysema, pulmonary hypertension
j. Heart diseases
k. Cancer (survivor issues)
l. Lymphedema, circulatory
m. allergies
n. Women’s issues, sequelae of childbirth (pelvic floor disorders, etc.)
o. Bladder
p. AIDS, STDs
q. Chronic pain
i. Fibromyalgia, etc.
ii. Chronic fatigue
r. Insomnia and other sleep disorders
i. Sleep apnea
ii. Restless leg (PLMD)