The Chronically Ill Child: When Our Best Doesn’t Seem Good Enough

The Chronically Ill Child: When Our Best Doesn’t Seem Good Enough

When something goes wrong with children’s bodies, the reverberations penetrate deep into the consciousness of families and health professionals alike.

Susan McDaniel, Jeri Hepworth, and William Doherty, Medical Family Therapists

Who of you parents have not stayed by the bedside of your child with a raspy cough, congested sinuses, warming temperature, or upset stomach? Illness is a strikingly predictable feature of childhood. Acute illness is bad enough but a growing number of families are raising children who have illnesses that are chronic and will likely never be fully eradicated. One estimate figured that approximately 27% of U.S. children live with chronic health conditions. This statistic includes learning and developmental disorders.

 

Stress and burdened parents and other caregivers abound as they seek to not only assuage their child’s suffering but deal with their own emotional sanity. Caregiver burnout is a common reality among parents and those who support chronically ill children, leaving them possibly feeling and experiencing the following:

 

  • Parental guilt
  • Compassion fatigue
  • Anxiety over lost developmental milestones
  • Grief over losing “normal” childhoods and imagined futures
  • Others’ fear of contagiousness (when family, friends, and neighbors avoid the sick child due to ignorance of the illness)
  • Vulnerability to health professionals

 

If you or somebody you know has a child that has a chronic illness, it’s easy to see how complicated and overwhelming this herculean task can be. Let me be the first to say, however, that the way one reacts to caregiver fatigue and burnout has nothing to do with the measure of love they hold for their child. This is one example of guilt that can spin parents into a vortex of poor self-esteem, self-doubt, and unyielding shaming of self.

 

There is something freeing about, what I call, “respecting your pain”. We don’t respect it like a grandparent or a life-long friend, but acknowledging its reality and that, left unmanaged, can cause significant problems within the family. How does one, then, handle the day-to-day demands of a child’s chronic illness? May I suggest the following:

 

  • Accept the child’s illness. Denying a child’s illness stops the natural progression of grieving patterns that are vital for the body to experience. Denial also thrusts a barricade to treatment that may be necessary and hinders assistance that can greatly ease the burdens of caregivers. Accepting the illness opens doors to healing and accessing services that can be a boon to the family system.

 

  • Put the child’s illness in its place. Chronic illness unbalances family life in a major way. The “well” children can be yanked into peripheral vision and ignored while efforts continue to focus on the ill child. Family activities are delayed or are entirely forgotten as demands of caregiving takes center stage. Putting the illness in its place can come in different forms such as only discussing the issue in only one room in the house, talking about it at certain times, and planning activities that are not based on caring for the illness. The family system is so much more about the illness of a child. Although it does have a place, it can be handled as any of the other issues that families face.

 

  • Promote open communication. Thoughts and feelings abound when illness creeps in as an unwelcome guest. As a car has an exhaust pipe to void toxins and gases that can damage it, so human beings have an exhaust pipe of our own that performs the same function: our voice! Airing out the emotional baggage carried can literally save one’s sanity. Keeping an open dialogue with the other children can go a long way. Don’t criticize your children when they discuss grievances. Don’t stop them or tell them that they can’t talk that way or it’s inappropriate. Listen to them. Hear what is on their minds. Empathize with them and communicate that it’s difficult for you too. Come up with a solution even if it’s just a walk around the block.

 

  • Negotiate with health professionals and schools. The ability to act goes a long way when it comes to dealing with difficulties. We want to have some control over at least some aspects of our lives. Healthy advocating gives a great deal of relief and a measured sense of control to parents. A warning, however. Don’t be too over-zealous where feelings get hurt and bridges are burned. If you’re unsure how to properly navigate and discuss these issues with professionals, seek out the guidance of a medical social worker or other trained professional that can help you better understand appropriate processes.

Chronic illness is a reality in life that has the capacity to stress parents to the point of alienation, isolation, divorce, and misery. It doesn’t have to come to this.

By Matthew Dean Barkdull, LMFT, MedFT