Patient's Responses
DISBELIEF AND DENIAL
One way to protect from the reality of a loss of health is to convince ourselves we are well. This is a common initial reaction in children and is reinforced if symptoms are minimal. Disability has little meaning to children unless symptoms are profound. Children's perceptions of disability may relate to whether they are in pain or have their normal routine disrupted by hospitalization. However, children do learn about their chronic conditions and the ways in which the conditions may affect their lives. Initially, denial and disbelief are useful to the patient for allowing time to assimilate a loss that might otherwise be too painful to bear.
Example: John is a 6-year-old who has been hospitalized and diagnosed with diabetes mellitus. He has been receiving insulin for a week with daily educational session and tells his doctor, "I sure will be glad to go home tomorrow so I won't have to take these shots anymore."
ANGER AND RESENTMENT
Patients often become angry when they recognize their loss. The anger might be directed toward God, their parents, the physician, or even themselves. Children with a chronic condition sometimes become manipulative and feel they should never be punished. These same children can use targeted, and usually very effective, behavior to persuade their parents to believe this as well. Other times, the belief begins with the parent. Adolescents can become particularly bitter when diagnosed with a chronic condition, often assigning blame to parents. Some adolescents exhibit self-destructive behavior, such as use of cutting, alcohol or other substances, as a way to demonstrate anger.
Example: Alicia's parents bring her to your clinic for a hospital follow-up. They tell you she just hasn't been the same since she was diagnosed last month, at age 16, with rheumatoid arthritis. She has twice failed to come home at curfew, and they are worried about her engaging in risky activities because of items they found in her room. They think her behavior is related to her newly diagnosed condition, so have not "punished her" for her behavior.
DEPRESSION
Depression or sadness reflects a loss, in this case a loss of health. There is a tendency to ask, ''Why me?" Children experiencing this stage mistakenly assume their condition is a form of punishment. Depression symptoms manifest in a variety of ways: loss of interest, poor appetite, crying episodes, withdrawal, and sleep disturbance. While sadness is a pathognomonic sign of depression in adults, children with depression don't always exhibit this symptom. In fact, it is far more common for children to show signs of irritability when depressed. Symptoms in adolescents are varied. They frequently abandon former goals, become withdrawn, "act out," or stop taking their medications. Consideration or attempts of suicide occur in children with significant depression, regardless of their age.
Example: Juan is a 15-year-old with a newly diagnosed seizure disorder. He quits his summer job. "I won't need to save money. I won't be able to drive or go to college, so what's the point?"
ANXIETY
Anxiety arises from uncertainty. Often, the less that is known about the patient's prognosis, necessary treatment, or projected length of illness, the greater the level of anxiety. Painful procedures and hospitalization are often anxiety-producing. Anxiety about social acceptance and the impact of the condition on social functioning are frequent concerns among adolescents with chronic diseases.
Example: Kim, a 6-year-old with hydrocephalus, has difficulty sleeping for 1 to 2 weeks before her follow up visit to her neurosurgeon fearing more surgery. She asks if she really has to go to school every day and cries when her mother says yes.
ACCEPTANCE
Acceptance is a relative term. Most patients and families never fully accept their chronic condition. This is probably beneficial. To arrive at a complete state of acceptance might lead to a state of resignation to either disability or death. Patients often learn to live with their chronic condition. Some lead full lives despite or even because of the condition. "Recognition of the condition" as chronic is perhaps a better term than "acceptance", which often implies resignation.
Some children have chronic medical conditions that do not allow independent living, for example, severe intellectual disability, cerebral palsy, and quadriparesis. These children need to have someone attend to their basic needs. Depending on the severity, as adults, they may be able to live in an independent living center with caretakers available for certain times and functions of the day.
Example: Aiden is a 12-year-old boy who was born very prematurely at 24 weeks gestation. He experienced bilateral Grade IV interventricular hemorrhages during the neonatal period. He is wheelchair-dependent and unable to walk, talk or care for himself. His mother tells you he has a beautiful smile, and he likes the water. His family is excited about taking a trip this summer to visit a water park specifically designed for children like Aiden.
