Coping with a Chronic Illness
Unlike a child with a temporary sickness, such as the flu, children with chronic illnesses must cope with knowing that their disease is here to stay, and it may get worse. As a result, these children, who may refuse to believe they are ill, may be at risk of developing emotional problems.
Young children cannot understand why the sickness has occurred. They may assume it is a punishment for being bad, and they may become angry with parents and doctors for not being able to cure them. Uncomfortable treatments and diet and activity restrictions may make them angry or withdrawn, which may cause them to react strongly against pampering and attention.
To help children deal with their disease, encourage them to express their fears and feelings regularly, and really listen to them when they share. Give them open, honest, accurate and age-appropriate answers to their questions. Communication, however, doesn't always have to be verbal. Music, drawing or writing can often help children living with life-threatening diseases express their emotions and escape through a fantasy world of their own design. Support groups are another great way for children to connect with others who have successfully adjusted to living with a chronic illness.
In their prolonged periods of hospitalization and/or rest at home, children may develop skills in a hobby or a special talent such as art, model airplanes or a foreign language. They may also try to learn as much about their illness as possible. Such activities are emotionally healthy and should be encouraged.
Teenagers with long-term illnesses may feel pulled in opposite directions. On one hand, they are dependent on doctors and their parents to take care of their physical needs, while on the other they want to be independent and join their friends in normal activities. In an attempt to take control of their bodies, teenagers with long-term illnesses may try to stop taking prescribed medications or lower their dosages without consulting with a physician.
Although kids with chronic illnesses certainly require extra TLC, special medical requirements don't eliminate the routine needs of childhood, such as going to school and following as normal a routine as possible. Parents should set limits on unacceptable behavior and stick to a regular routine, even during stressful times. Children who do not follow a normal routine during their illnesses may have a harder time readjusting when they are home and feeling better. Parents should respond to the child’s strengths, not the illness. When isolated and/or overprotected children do not socialize, they may have difficulty separating from their parents when it is time to re-engage in school and outside-the-home activities.