22 November 2017
Over the years, one thing we’ve observed here at Westchester Health Pediatrics is that the stress of a child’s serious illness, chronic health condition or disability often causes problems in the family at large, particularly if parents try to deal with their fears, frustrations and exhaustion without support.
In some instances, parents become so consumed with the care of their child, at the expense of nearly everything else in their lives, that their marriage ends in divorce or their other children develop issues of their own because they feel ignored.
Parents might feel that the demands of their child’s condition are never-ending (trips to the doctor or hospital, bathing/dressing, medical treatments), leaving them with little or no energy for anything else. Time spent with their spouse, their other children and their own personal interests is often sacrificed.
To help with these feelings and frustrations, we offer these words of advice and encouragement, and hope that parents in this situation will reach out for help and support.
Common feelings of parents of disabled children or those with chronic illnesses
Guilt. Parents of a child with a chronic illness or disability often feel guilty, as if they somehow caused the condition. Self-blame is particularly prevalent when the condition was present at birth, is genetic and/or when the cause is unknown. 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 other children and each other. If guilt or other emotional issues are interfering with the quality of your family life, we urge you to seek professional counseling.
Lack of discipline. Many parents find it hard to discipline their chronically ill or disabled child. However, all children (even those with special needs) benefit from having clear boundaries. Otherwise, they easily become overly dependent, have lower self-esteem and develop behavior and social problems. We strongly feel that parents should establish a consistent set of family rules and expectations, adjusting them as needed as the child’s health fluctuates. This helps create an environment that encourages independence and self-confidence.
Financial stresses. Sometimes a parent has to give up a career to become the primary caretaker at home, especially when the child requires extensive help with daily activities. A parent may have to change jobs, or take on a second job, to bring in more income to cover additional medical bills associated with the child’s condition. The family may also have to move, relocating closer to the medical services the child needs. Fortunately, several state and federal programs are available to help families with the costs of chronic health care. Supplemental Security Income (SSI) for children, for example, now provides cash benefits to many families with children with chronic illnesses. Your pediatrician or social worker should be able to refer you to the proper agencies for help.
Families can still thrive as they cope with a child with a chronic illness or disability
What we’ve seen many times in our practice is that a child with serious health problems may actually bring parents and other family members closer together. Families—especially those who are open and honest with their feelings—can be strengthened by everything that goes along with managing their child’s health condition or disability. In many cases, this provides them with a sense of cohesiveness and purpose that builds the resiliency of the family and strongly binds them together.
There is help; you don’t have to go it alone
Remember, you should not try to solve all family problems associated with your child’s illness or disability by yourself. Physicians, psychologists, social workers, family therapists and other parents of children with chronic illnesses and disabilities are very important resources for you and can make all the difference in the health of your family.
Social networks can also be valuable sources of support for you in your community, such as support groups, faith-based groups, friends, extended family members and any others who can understand what you’re going through and be a helpful source of support. We urge you to find help, support and community.
Feeling overwhelmed? Come see us, we’re here to help.
If you have a child with a chronic illness or disability, please make an appointment with Westchester Health Pediatrics. We have years of experience and lots of advice and guidance to offer, as well as a listening ear. Our #1 goal is to help you manage your child’s condition in such a way that you, your child and your entire family live a healthy, happy life. Whenever, wherever you need us, we’re here for you.