Families facing chronic illness face constant worries about treatments, lifestyle adjustments, dealing with the medical establishment, finances, changes in regimens or routines, not to mention dealing with serious medical events themselves. Communication gets especially tricky when children enter the picture.
“Parents always need to keep in mind that children hear and observe, even when you think they don’t,” says Gary McClain, PhD, president and CEO of resource site JustGotDiagnosed.com, which help patients come to terms with the diagnosis of serious illness. “Children often hear and overhear things you might be trying to keep from them. When it comes to chronic illnesses, the best option is to be as open as possible about what’s happening, whether it’s to the child itself, or another family member.”
Children often hold back on expressing what they fear will cause their parents to become upset, but those unspoken thoughts and feelings don’t just evaporate away. In fact they can lead to lead to assumptions and distortions that are far more serious than the situational reality.
According to McLain, it’s extremely important that parents are clear with their own feelings, so they can be open to their kids’ feelings.
“Don’t forget that all children in the family are affected by chronic conditions, so bring them into the discussion,” McLain says. “They are dealing with the same issues and will also need some adult guidance.”
There are many impediments to open communication when it comes to talking to children and others about chronic conditions. These “elephants in the room” include feelings of anger, guilt, grief, helplessness and fear. To help foster healthy family communications, McClain offers up several tips for communicating with family members, especially children, in households where a member has chronic illness.
• Practice listening and show off what you learned.
• Encourage children to develop their own coping skills.
• Offer guidance, but also allow for discussion.
• Be a role model.
• Create family routines and rituals, because regular routines reduce stress.
• Routines should be predictable and consistent.
• Rituals (holidays, weekends, vacations) should allow for all family members to participate equally, based on their strengths.
• Always offer choices and explain boundaries.
• Where possible, allow for some choices in routines, healthcare, diet, which will provide a sense of control.
• Explain your boundaries and listen to the other side, too.
• Teach children to be their own advocates.
• Teach kids to deal with questions and comments from friends, teachers, other adults.
• Role play in a way that is comfortable and affirming, which might mean talking about “what is” rather than what “should be.”
• Don’t let any “elephants” (i.e., unstated secrets) hide around the house without exposing and discussing them openly.
“Above all family caregivers need to learn how to show themselves as much compassion as they do the person they are caring for and the children in the home,” McClain says. “When people are caught up in their own unrecognized feelings, that’s what they end up communicating to others. It’s crucial to keep in mind that we communicate not only through words, but also through our actions and our emotions.
Robin Waxenberg is a freelance writer.