You've helped your child make adjustments to medications, diet,
and certain lifestyle changes to manage inflammatory bowel disease
(IBD). But the greatest challenges he may have to contend with are
the social and emotional challenges that come with having a chronic
illness.
In particular, your child may be struggling with concerns about
being "normal" and fitting in, embarrassment and shame over having
IBD, worries about his health, frustration with the restrictions
and limitations imposed upon him by the illness, and being rejected
or harassed by other children. How can you help him cope?
Your child may be worried about his symptoms, which can be
painful, as well as the disease itself. His worst fears may be due
to the fact that he doesn't understand or know enough about his
illness.
You can help by having the doctor talk to your child about his
symptoms, treatment, the side effects of treatment, and what he can
do to feel more in control of his IBD. Also, take advantage of
information in your library and on the web, and contact
national organizations that can provide resources and support.
When your child is feeling down, or thinking too much about his
disease or his restrictions, acknowledge his feelings and help him
to focus on his strengths, talents, and other assets.
See that he gets involved in school activities (those which
allow him to manage his IBD without embarrassment) as much as
possible. Any activities at school or in the community that allow
him to explore his interests and show his talents can help.
Another good way for your child to forget his own troubles for a
while is through helping others. Encourage him to help you cook a meal, plant a garden, or run errands for an elderly person.
Children with IBD experience a variety of emotions: anger, fear,
sadness, resentment, and embarrassment, as well as joy and pride
when they overcome the obstacles of their illness and reach goals.
It's important for your child to know that he has a right to
all
of his feelings, and that feelings shouldn't be labeled
as "good" or "bad."
One way you can help your child deal with his feelings is to
listen to him and offer support. Don't tell him to stop feeling
sorry for himself or that he "should be happy." When you affirm all
of his feelings, he will feel better understood and more
self-accepting.
Encourage your child to talk about his feelings with you or
your spouse, a sibling, friend, teacher, healthcare provider,
counselor, or any other trusted and supportive person. There are
other ways he can express emotions as well, such as through art
or journal writing.
At times, your child may be consumed by negative thoughts, like feeling as if he caused the illness.
Reassure him that he is not at fault for his condition. You can
help your child to accept IBD by getting him to focus on how he's
going to handle it. Help him to stay positive and think about his
goals and dreams. Family, friends, hobbies, playing with a pet, or
taking a walk can help lift his spirits. Help him to feel empowered
with positive self-talk.
A positive experience at school increases your child's
self-esteem, sense of accomplishment, and happiness. You can help
increase his chances of having a positive experience at school by
making ongoing contacts (preferably in person) with his principal,
teachers, and other school staff, so that they are aware of his
special needs.
Specifically, school staff will need to be educated about your
child's IBD, medications, diet, emotional, and physical stress,
emergency situations, absences, and access to a private bathroom. Also, make the staff aware of the potential for your child to be alienated or harassed by other students because of his condition.
If you are at ease with talking about IBD openly, your child
will probably feel more comfortable sharing information about it,
as well. This can help him to handle the fears and questions of his
peers, who, once better informed, may not be so apt to tease or
alienate him. However, your child should be encouraged to share
knowledge and feelings about his illness only to the degree to
which he feels comfortable.
