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:                                                             :
:              Excerpts from _Derby City Celiac_              :
:              ---------------------------------              :
: Fall 1999                                Bill Banks, editor :
:               Greater Louisville Celiac Sprue Support Group :
:                                                 PO Box 7194 :
:                                  Louisville, KY  40257-0194 :
:.............................................................:


Living with Chronic Illness, Laurie Grimes, Ph.D.
---------------------------

Laurie, a child psychologist and parent of a child with celiac disease
(CD), spoke at the June 10 meeting about the psycho-social aspects of
chronic illness and, specifically, about living with CD.  The talk
began with a discussion of the stresses of chronic illness, such as
asthma, cystic fibrosis, diabetes, and CD, and the psychological
issues that typically accompany each stage of such illnesses.

At the initial diagnosis stage, among the many emotional hurdles are
reorganizing family routines, managing reactions of family and
friends, learning to accommodate community outings, and the pervasive
sense of loss and grief that may accompany the feelings of having lost
the "normal, healthy self."  These feelings of grief and sadness often
ebb and flow throughout the course of the patient's life as the
illness is gotten used to and then the burdens of managing one's
health feel burdensome in comparison to the lives of others.

Transition periods are often particularly difficult because they
entail establishing a new routine in a new environment and.
indoctrinating new people to the illness.  For children that involves
beginning school, going to a sleep-over, and going off to college, and
for adults it can be moves, retirement, travel, or any number of new
stages of life.  The sense of control and feeling of "normalcy" may be
disrupted in transition periods which is stressful and may occasion
feelings of sadness or irritation at being burdened with this
condition.

Other life-long social and emotional issues that are present from the
point of diagnosis are maintenance factors--the routine necessary to
keep your body healthy.  Adhering to the routine and complying with
the treatment, and coping with social isolation and strain on
relationships are some of the many chronic psychological stressors.
Of course, the severity of the psychosocial pressures varies by
illness and by person.  The severity of the illness, prognosis for
healthy living, difficulty and hassle level of the treatment, as well
as an individual's personal coping style and perception of the
illness, level of support, and sense of control have a strong
influence on the experience of living with a chronic illness.

The talk concluded with a more focused look at the experience of CD in
comparison to other chronic illnesses.  Psychological issues are
pertinent to celiacs for several reasons:

(1) Before diagnosis the symptoms frequently include
    emotional/behavioral problems, often with a referral to a mental
    health professional.

(2) CD often co-occurs with mental health problems.

(3) There are some links to depression, autism, ADD, etc.

(4) There are coping and adapting issues after diagnosis, as discussed
    above.

Despite involved and difficult restrictions necessary for adherence to
a gluten-free (GF) diet, CD can be seen as the "lesser of chronic
illnesses".  Not only are there no medicines, surgeries, or therapies
necessary, but unlike other chronic illnesses for which the diagnosis
may signal a gradual decline in health or a chronically fragile
health, with the onset of the GF diet, persons with CD can, for the
most part, look forward to a healthy and lengthy life.