"When I found out my child had a chronic illness, it seemed like the end of the world. I ached so bad and I felt so angry."
Parents often experience an array of emotions as they come to terms with their youngster's illness. Immediately after the diagnosis, many mothers and fathers enter a mourning period, grieving over the "loss" of their healthy child. They must cope with the shock and the pain and try to accept the new reality of having a youngster with a chronic illness. Parents often deny this reality and tell themselves things like "This can't be happening... The laboratory must have gotten our test results mixed up with someone else's. When am I going to wake up from this nightmare?" Eventually, parents usually begin to find ways to accept their child's illness, despite periodically feeling sad, resentful, anxious, and angry.
Common Feelings of Parents of Children with Chronic Illnesses
Guilt is common among parents, often feeling that they somehow caused the illness. Self-blame is particularly prevalent when the condition was present at birth, has a genetic basis, and/or when the cause is not known. Guilt can be an excruciating and disabling emotion, adding to the stress within the family and sometimes making it difficult for parents to be supportive of their children and each other. If guilt or other emotional difficulties are interfering with your parenting abilities or the quality of your family life, you may benefit from some professional counseling.
Other adjustments may be necessary as well. There can be considerable financial cost associated with a child's chronic illness. As medical bills mount—with frequent doctors' visits, medications, hospitalizations, and other outpatient services—worry over finances can intensify.
Many parents find it to be very difficult to discipline their chronically ill child. However, all children need and benefit from having clear limits and consistent expectations. In their absence, children may become overly dependent, have lower self-esteem, and begin to have behavioral and social problems. Parents should establish a consistent set of expectations, adjusting them as needed for acute episodes as the child's health fluctuates. They should provide an environment that encourages independence and self-confidence.
Sometimes a parent may have to give up a career or education to become the primary caretaker at home; this is particularly true when the child requires a great deal of assistance with daily activities. A parent may have to change jobs, or take on a second job, to increase the family income. These adjustments are sometimes complicated when a new job necessitates switching health insurance policies, causing a situation in which medical bills associated with the child's chronic illness (referred to as a pre-existing condition) are not covered. The family might also have to move, relocating closer to the medical services the child needs.
Several state and federal programs are available to help families with the costs of chronic health care. Recent changes in the eligibility criteria for Supplemental Security Income (SSI) for children, for example, now provide cash benefits to many families with children with chronic illnesses. Eligible youngsters generally include those with significant psychiatric conditions and severe chronic illnesses, such as cystic fibrosis, congenital heart disease, malignancies, and many others. Your physician or the social worker at your local hospital should be able to refer you to the proper agencies for help.