Families Coping with Autoimmune Disease
by Robert H. Phillips, Ph.D.
An autoimmune disease can certainly have an impact
on the family. It not only affects the individual with the
condition; it also can affect every member of the family.
The way the fam
ily feels about how it affects a loved
one, and the cohesiveness of the family, is very
important. If family members get along well, and they,
like the person with the autoimmune disease, cope
successfully with the disease, this will provide an
solid springboard for progress.
Family members may experience many of the
emotional reactions that the person with an
autoimmune disease does
ranging from anger and
depression to fear of the future or fear of
complications. Sometimes family members re
strongly and possibly even more irrationally than the
s been diagnosed with the autoimmune
disease. There may be more denial on the part of a
family member. There may be guilt, especially on the
part of parents if they feel that they
contributed to the onset of the autoimmune disease in
Some family members ignore or play down the
disease. They often do so because they can
t deal with
it. They may be afraid of its getting worse. They may
feel that they
e unable to provide the practical or
emotional support needed. Or they may be unable to
accept the possibility that it might have something to do
with them. Ignoring or denying it may help them not to
think about it, hoping that it will go away.
other hand, there are family members who
think of nothing else besides the autoimmune disease.
They may constantly bombard their loved one with
questions about their symptoms, treatment, and other
activities. They may feel responsible for the person and
believe that they must take total care of their loved
one. They may dwell on this to the extent that they
may appear to be smothering to the person.
Family members should use many of the coping
strategies that the person with the autoimmune disease
to deal with the condition. For example,
education, support groups, and coping strategies are
valuable for all. Let
s discuss some specific suggestions
for ways that family members can improve their ability
to cope with an autoimmune disease.
Since all family members are
affected if someone in the family is ill, it can be very
helpful for them to be able to share how they feel. A
family meeting and discussion can help you improve
constructive communication within the family. F
technique to work best, all available family members
should be included. Give each person a predetermined
amount of time (start with five minutes) to share
feelings, gripe, air grievances
even cry. However, the
intent of any communication must b
e constructive. No
one else should interrupt. Reactions are permissible,
but only after each person has had his or her few
minutes. Just getting together to discuss feelings can
bring family members closer together.
Strive for good communication.
e are a number of
things you can do to maximize the effectiveness of
communication between family members. The better
the communication, the closer the family, and the more
support will be provided from all
to all. Consider the
Be cautious and gentle in any feelings that are
Schedule time for conversations related to the
autoimmune disease and its effect on each
member of the family.
Allow others time to think about the issues that
need to be discussed.
ow a reasonable but not overwhelming
period of time for discussion.
Express feelings in a clear, objective way. Avoid
Ask clarifying questions (in a positive,
constructive way) if there are any points
are not understood.
Listening is one of the most important
parts of communication. If you don
t really hear what
others are saying, how can you truly understand what
re feeling? Some suggestions include not
interrupting when people are expressing th
or opinions, making eye contact and being sure you
fully aware of what they
re saying, and even restating
their comment in your own words to show that you
understand what they
ve just said. Being a good
listener will also set a good exampl
e for others
show them that you would like them to listen to you,
Look through the other person
When you want
to communicate effectively, it is extremely helpful (if
not necessary!) to view the problem through the eyes
of the perso
re talking to. If you
wrapped up in your own point of view, you
ll have a
much more difficult time trying to understand anyone
s feelings or comments. But if you try to see the
situation through the other person
s eyes, it will help
you when you try to explain your point of view.
Work together to change family responsibilities.
autoimmune disease can cause a shift in responsibilities
for different family members. Different family
members may have to pick up any slack this crea
Changes in responsibilities can bring about anger or
resentment. So work together with your family.
Discuss these difficulties constructively.
Encourage family events.
Often, family cohesiveness is
strained because of a lack of time spent togeth
enjoyable things. This can be changed! Have each
family member suggest the pleasurable activities they
enjoy. Try to get a consensus, considering any
limitations the autoimmune disease may impose, and
schedule an activity at a time convenient t
Remember: The family that plays together stays
Consider implementing additional helpful tips.
are many additional ways of providing loving support
for someone with an autoimmune disease:
Show a willingness to participate in
necessitated because of the autoimmune
disease. Examples include participating in
exercise programs or special activities, eating
healthier, and being a willing participant in
Try to minimize the degree to which yo
critical of your loved one for inappropriate
Be supportive of your loved one if he or she is
going through an especially hard time. Being
able to provide genuine, loving support is one
of the greatest gifts you can give to your loved
one. And don
t always feel that you have to
come up with answers. Just being supportive
c can be helpful enough.
Try to be extra tolerant and supportive, rather
than being critical, during times when your
s symptoms (physical or em
are more pronounced. It
s also important to
be aware of the difference between medical
reasons or non
medical reasons for these
se humor as an important coping strategy, but
make sure that this is not perceived as making
fun of the p
erson with the autoimmune disease.
A united family is one of the most important
ingredients in successful coping. Having an
autoimmune disease makes family relationships more
vulnerable to problems, arguments, and even crises.
Working through disease
ated problems requires much more attention to the feelings of each family member. But its worth it. If problem spots can be
smoothed out, a cohesive family can really be an asset
in successfully coping with an autoimmune disease.
About Robert H. Phi
Dr. Robert H. Phillips is the founder and director of the
Long Island, NY,
Center for Coping