A chronic, or long-lasting, illness can be difficult for anyone to deal with. But for a young child diagnosed with a chronic health condition, there are challenges for both child and parent.
Although you’ll need some time and help coping with the diagnosis, it’s also very important that you be there for your child. A child with a chronic illness will have questions, fears, and frustrations. And he or she will need strength and support from you to help in dealing with the changes in the months ahead.
You can do a number of things to help your child cope with the chronic illness.
After a child is diagnosed with a chronic illness, he or she may face a barrage of hospital visits, tests, procedures, and other obligations. This can make children feel as if life is no longer in their hands, and they no longer have a say in anything.
You can help your child avoid this overwhelming experience by giving him or her options and choices as much as possible. Even if it’s as simple as what he gets to have for dinner or who gets to visit her in the hospital, these choices will allow your child to feel empowered during a difficult time.
Also critical in helping a child feel normal during a chronic illness is maintaining social ties with friends and family. If possible, this may involve following normal routines even with the chronic illness, or having friends visit in the hospital.
Many children are frightened and confused when a friend has a chronic illness. As a parent, you can help keep your child’s social circle strong by reassuring his or her friends (and their parents) that everything will be OK.
If a child has a chronic illness, it’s not uncommon for him or her to develop a mood disorder such as clinical depression. Some of the signs and symptoms to look for include a lingering bad mood, withdrawal from friends and family, or talk of suicide.
Signs of depression are more typical among young girls than boys, and they tend to occur more commonly if the illness affects the child’s appearance or activity level. If you notice any of the signs of depression in your child, make sure to talk with your child’s health care provider. A variety of medications or treatment options is available.
Although religion and other forms of spirituality are usually seen as more important to adults with a chronic illness, they can be helpful for children, too. Thinking about the spiritual side of illness, for instance, may help a child rationalize what is happening to him or her.
When dealing with a chronic illness, it’s also not uncommon for issues of death and dying to come up. For example, a child may feel he or she is being punished for some past misbehavior, or he or she may wonder why a higher power would allow this to happen. In these situations, reassure your child as best you can. You can also invite spiritual leaders into your support circle when appropriate to help address your child’s concerns.
If a chronic illness eventually becomes terminal, the parent’s role is to provide comfort and support wherever needed. You can help your child arrange to say his goodbyes to family, friends, and loved ones through personal exchanges or letters.
It’s not uncommon for the child to become quiet and withdrawn during this period. This shouldn’t be seen as rejection, but rather as part of your child’s preparation process for death.
Chronic illness can be extremely difficult for both parents and children to handle on their own. Don’t be afraid to ask your health care provider about mental health counseling for you, your child, and any other family members affected by the illness if you feel like you need it.