Impact of Chronic Illness

Many different coping strategies can help family
members deal with the stresses of chronic
illness. But when coping strategies aren’t
enough, help should be sought.
The Impact of Chronic Illness
By Erika Lawrence, PhD on the Family
June-July 2012 www.IGLiving.com IG Living! 21
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Indeed, chronic illness changes family members’ roles,
responsibilities and boundaries. It disrupts their selfimages and self-esteem. It results in uncertain and unpredictable futures. And it triggers distressing emotions —
anxiety, depression, resentments, feelings of helplessness,
as well as illness-related factors such as permanent
changes in physical appearance or bodily functioning.
How a family responds to chronic illness varies based on
the age and developmental stage of the ill individual, the
strength and coping mechanisms of the family, and the
family life-cycle stage. There are many different ways that
a chronic illness can affect a family. The person who is
chronically ill may feel guilty about the demands his or her
illness makes on the family. He or she may resent the change
in roles and responsibilities caused by the limitations
imposed by the illness, and he or she must deal with the
threat to his or her autonomy and the need to depend on
healthy family members.
The spouse or partner of a person with a chronic illness
can be faced with dual challenges: 1) as the primary
provider of support to the ill partner and 2) as a family
member who needs support in coping with the illnessrelated stresses he or she is experiencing. The burdens of
being the primary caregiver may take their toll. The spouse
may feel trapped while trying to balance dependence and
autonomy of the patient with his or her own needs. He or
she may feel tired or emotionally drained by the long duration
of the illness or the extent of the caregiver workload. The
spouse may struggle with feeling powerless when his or
her partner is in pain, or by the pressure to be emotionally
strong. There may be concerns about the consequences of
the illness for the spouse, his or her partner and, if relevant,
the children. And, he or she may have to restructure family
roles and responsibilities as the disease progresses or
presents new challenges.
Having a child with a chronic illness affects the parents
in unique ways as well. Some studies suggest that having
a child with a chronic illness has a negative impact on the
relationship, including lack of time with the spouse,
communication problems, higher divorce rates, increased
relationship conflict, increased role strain, and decreased
relationship satisfaction. Yet, other studies indicate that
there are no effects, and still others have found positive
effects including increased closeness, greater cohesion
and increased support. Indeed, rates of divorce are lower
among couples who have a child with a chronic illness.
However, the impact that having a child with a chronic
illness has on the adult relationship depends on the severity,
course and prognosis of the illness, as well as on the quality
of the relationship before the child became ill.
Given all of these adjustment demands, one might expect
that the presence of a chronic illness would inevitably result
in significant emotional difficulties and breakdown in family
functioning. But, despite the presence of conditions and
situations that are clearly traumatic and disruptive, a
substantial proportion of families make satisfactory if not
magnificent adjustments.
Effective Ways for Couples to Cope
Most people talk about coping as problem-focused
(taking care of what needs to get done) or emotionfocused (trying to reduce emotional distress). However,
there is a third type of coping that is critical for couples or
families faced with a chronic illness: “relationship-focused
coping.” Relationship-focused coping means focusing on
maintaining the quality of the relationship as part of the
coping process. When faced with a stressful situation,
each partner may attend to the other’s emotional needs in
order to maintain the integrity of the relationship. Partners
endeavor to manage their own distress without creating
upset or problems for the other partner. Relationshipfocused coping involves a balance between self and other,
with the goal of maintaining the integrity of the relationship
above either spouse’s needs. Effective strategies include
negotiating or compromising, considering the other
person’s perspective and being empathic. Specific strategies
include:
View the illness as a couple or family problem: If both
partners take a relationship perspective, they see the illness
as a problem for the relationship, rather than just a problem
The person who is
chronically ill may feel
guilty about the demands
his or her illness makes
on the family.

22 June-July 2012 www.IGLiving.com IG Living!
for one individual. They talk about the relationship as a
way to cope and maintain the relationship. Couples who
become aware of and discuss the relationship implications
of a partner’s illness can anticipate how their relationship
may change and prepare for the difficulties they may face.
Couples who are resilient when faced with a chronic illness
believe that they are in it together and serve as each other’s
confidante, advisor and sounding board. Therefore, their
attention should focus on the relationship as its own entity.
For example, if the caregiver is thinking about how difficult it must be for his or her partner to be ill, then the
focus is on the partner within the relationship but not on
the relationship itself. With “relationship awareness,” the
caregiver focuses on the relationship by telling his or her
partner that the difficulties posed by the illness are ”their”
difficulties, thereby taking a relationship perspective in
dealing with the illness.
Use similar or complementary coping strategies: The
goal of couple coping is to maximize the fit between partners’ coping styles in order to most effectively cope as a
couple. Strategies that work in direct opposition or cancel
out each other lead to poorer family dynamics. Couples’
coping strategies can be effective if they are similar or
complementary, though. If partners use similar coping
strategies, it might be easier to contend with stress.
Coping efforts are coordinated and mutually reinforcing
— that is, one partner’s efforts do not impede the other’s
efforts. Complementary coping styles can be effective
when they work together to reach a desired goal, e.g., by
filling a coping “gap.” In fact, complementary strategies
may be more effective than similar strategies because the
couple, as a unit, has a broader coping repertoire.
What if each partner has very different coping strategies?
Partners need to be aware of and talk about their own and
their partner’s coping styles. The goal is to understand and
respect each other’s ways of coping. Also, given that each
has different coping styles, it is especially important to
compromise, communicate about feelings to each other,
give each other time alone, and reassure each other of
their love and concern.
One relationship-focused coping strategy is protective
buffering, which involves “hiding concerns, denying worries
and yielding to the partner to avoid disagreements.”
Although protective buffering is ostensibly used to avoid
disagreements and “protect” the relationship, it can
negatively affect the person using it because the partner
may feel constrained in expressing negative emotions or
worries. However, protective buffering doesn’t appear to
harm the partner being “protected.” In general, it is necessary
to balance taking care of oneself and the partner — for
both the individuals and for the relationship.
Effective Ways for the Whole Family to Cope
Communicate with each other: Family members should
communicate constructively about the illness and treatment.
They should use active and empathic listening skills and
consider other family members’ perspectives. When
sharing something sensitive, they should be mindful of
what is being communicated, how it is being said, and
when it is communicated in relation to the others’ level of
reception. They need to talk openly about the chronic
illness, but not allow talk of the illness to dominate the
family members’ daily lives.
Support each other: Effective support in a family
involves more than just “being supportive.” First, different
people want different types of support: Some people want
practical help, others want to be listened to, and still
others want to know that the other family members think
they are strong enough or capable enough to handle
things. More support is not necessarily better. What kind
of support the family member wants needs to be
understood and then provided. Second, family members
need to learn to ask for the kind of help or support that is
wanted. Each member of the family wants some kind of
support. Others tend to provide the kind of support they
would want, but they may not know what the others
want. It shouldn’t be assumed that family members can
read each other’s minds.
Increase and lean on social support outside of the
family.
It is well-known that having a social support
network outside of the family benefits all members of the
family, both physically and psychologically. Sometimes,
just knowing they are available if needed — even if they
are not turned to — can be helpful.
Integrate tasks of illness into the family’s daily routine.
This will help the family develop a coordinated, cooperative
Couples’ coping strategies
can be effective if they are
similar or complementary.

June-July 2012 www.IGLiving.com IG Living! 25
approach to dealing with the multiple demands of the
illness and its treatment.
Take care of family members’ physical and psychological
health
. This is important for every family member. They
need to learn relaxation or mediation techniques, exercise
regularly, take some time alone, take time to get away
from it all as a family, take walks and plan fun activities.
Find the new normal: The goal is to move from crisis
management to incorporating the illness into the family’s
daily lives. The fact is that life will never be exactly the
same as it was before. Therefore, family members should
challenge themselves to define what a “normal” family life
is now. They should struggle to find ways to understand
and make meaning of the experience.
When Should Help Be Sought?
If a significant amount of time has passed (a year or
more), and “yes” can be said to one of the following, it
may be time for a family to seek help:
• When the chronic illness colors every aspect of a
family’s interactions.
• When partners have different coping strategies and
cannot find common ground regarding the many demands
of the illness.
• When one or more family members routinely withdraws
into silence. This may or may not be helpful for the person,
but it will not be helpful for the couple’s relationship or for
the family.
• When one or more family members routinely takes on a
reactive, anxiety-driven, tell-all communicative style of coping.
• When a family is still stuck in the “crisis phase” and
not the ongoing process of adapting to a “new normal.”
There are many different kinds of help out there. Family
therapy is particularly helpful early on. It has been shown
to promote positive adjustment for families. It can help
educate families about the person’s specific chronic illness
and teach family members effective coping skills.
Child or adolescent therapy can be used to educate
a child about his or her illness, and to teach stressmanagement techniques to promote healthy coping skills
and create a buffer against stress. Child therapy also is
recommended to help children or adolescents express and
learn to cope with their emotions (fear, anger, sadness)
when a parent is ill.
Group therapy or support groups can help caregivers,
patients or parents of children with a chronic illness by
reducing stress.
Certain types of couple therapy have been shown to be
very effective at improving couples’ coping skills, at helping
couples learn to engage in relationship-focused coping
strategies, and at improving communication and support
skills. Couple therapy has been shown to improve
patients’, caregivers’ and couple health and functioning.
Make sure to find someone who is specifically trained in
the type of therapy that is being sought — not someone
who “does it all.” Also, ask if the therapist is specifically
qualified to work with families in which one member is
chronically ill. You have unique challenges to face and
need an expert.
Coping Is Possible
Chronic illness can be extremely disruptive to family life.
But, it can be possible to maintain a homeostasis by using
the many coping strategies available, as well as seeking
help when necessary.
ERIKA LAWRENCE, PhD, is an associate professor in the department
of psychology at the University of Iowa.
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Family therapy is
particularly helpful
early on.