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Anxiety
Patients are frequently fearful and anxious about genetic counseling (Kessler 1992a,
b; Klitzman 2010 ; McCarthy Veach et al. 1999 ; Weil 2010 ). If their anxiety is too
intense, it will disrupt their thoughts and behaviors. For example, they may have
difficulty comprehending and retaining genetic and medical information. Patients
typically will not express their anxiety directly. Instead they may show it indirectly
(e.g., repeating the same question, avoiding sensitive topics by changing the subject,
joking, making trivial comments, frequently interrupting you, seeking excessive
reassurance from you, behaving dependently). Anxiety is a very contagious emo-
tion. Often you will find yourself beginning to feel uneasy; and this can be a clue
that your patient is anxious.
First you must recognize your patient’s anxiety. Next you should remain calm
(take a couple of deep breaths); your demeanor may have a calming effect on your
patient. Finally, you should reflect your patient’s anxiety: “You seem to be nervous.
Can you tell me what’s making you feel that way?” Talking about your patient’s
anxiety in a relaxed, accepting way may help to diffuse it.
Guilt and Shame
Guilt and shame are common emotions, especially when patients are the parents of
children who have genetic conditions (Djurdjinovic 2009 ; Douglas 2014 ; Sexton et al.
2008 ; Weil 2000 , 2010 ). Some patients feel guilty for having negative feelings about
a child or family member with a genetic condition. Other patients feel guilty because
they believe they’ve done something wrong and are being punished by God or a higher
power (Sheets et al. 2012 ). It can be very difficult to discuss the scientific basis of
genetic situations with patients who view their situation as punishment for their own
or their ancestors’ transgressions. Until you address some of your patient’s guilt, you
probably will not be very successful at communicating genetic information.
Consider the following example: The genetic counselor was counseling a Korean
couple who shared with her their belief about why their son had muscular dystro-
phy. They had an ultrasound study early in pregnancy, and their doctor said the fetus
was “likely” female. So, the couple had prayed for a boy. They felt this “conversion”
from a girl to a boy resulted in the mutation causing the disorder in their son, and
thus they felt responsible (guilt) for having caused the disorder. The genetic coun-
selor certainly could not dispel their belief, but she felt the couple’s awareness and
their willingness to share their belief with her spoke volumes about their progress
toward acceptance of this diagnosis.
Shame is a feeling of being flawed and/or unworthy as a person (Cavanagh and
Levitov 2002 ). Shame is a difficult feeling to acknowledge. Patients who feel shame-
ful may engage in repression by keeping awareness of their shame out of conscious
experience and by refusing to think about the situation that has led to this feeling
(e.g., a diagnosis of a genetic condition). Emotional clues that a patient may feel
shame include chronic low levels of depression, uneasiness or anxiety, and guilt.
9 Patient Factors: Resistance, Coping, Affect, andfiStyles