You have helped your child make adjustments to medicines, 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 teased by other children. How can you help your child cope?
Your child may be worried about his symptoms, as well as the disease itself. The worst fears may be due
to the fact that he does not understand or know enough about his
illness. Reassure your child that he is not at fault for his condition. Some signs of difficulty you may see are:
- Poor eating habits.
Sadness, frequent crying, loss of interest in activities may indicate signs of
Your child understands a chronic disease must be managed through life, but remind them that IBD does not have to slow them down. Let them know they are not alone and they will live a normal life like other children. Here are some tips to set your child on the right track.
When your child is feeling down or thinking too much about his
disease or his restrictions, acknowledge his feelings. Help him
to focus on his strengths, talents, and other assets. Although it is normal to feel upset or unsure about IBD, it should not overrule other thoughts or feelings. Activities that may help manage stressful times include:
- Regular exercise is a mood booster and helps refocus attention.
- Find a hobby that is enjoyable.
- Create a strong network of supportive people, like friends, teachers, family, or health care professionals.
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 person in need of assistance.
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 is important for your child to know that he has a right to
of his feelings, and that feelings should not 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. Try to get at the root of his emotions and see if the problem can be solved.
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. Remind your child that there are ways for him to control the disease and controlling it can reduce the chances of flare ups.
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 is
going to handle it. As your child gets older, give them more responsibility about medications, diet, and managing the the day to day aspects of the disease.
If your child is a teenager and feels more comfortable about it, he may want to inform others in his life about what is going on. It is not unusual for other teens to start asking questions, and it may be easier to open up to friends. How much your teen wants to share is up to him.
Help him to stay positive and think about his
goals and dreams. Here are some other things that may make your child feel better and help them empower themselves:
- Get enough rest, even between flare ups.
- Stick with the diet that works. Know what foods make him feel good and bad.
- Take medications as directed all the time.
- Keep seeing the doctor on a regular basis.
It is important for your child to feel there is control, but sometimes that may not be possible. Part of help is getting him the support he needs.
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
Specifically, school staff will need to be educated about your
child's IBD, medicines, diet, emotional and physical stress,
emergency situations, absences, and need for 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 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.
You can help by having the doctor talk to your child about his
symptoms, treatment, side effects of treatment, and what he can
do to feel more in control of his IBD. Also, take advantage of
information at your library and on the Internet, and contact
national organizations that can provide resources and support.