Unfortunately, family members too often avoid discussing the chronic illness beyond the basic lifestyle considerations and medical treatments – all of which can be overwhelming – but leave the other aspects of coping to fall into place. Yet, by not communicating, opportunities for developing coping skills – and reducing the inevitable stress that can accompany illness – are missed.
If you have a child with a chronic condition, here are some suggestions to create teachable moments that will help everyone in the family to communicate better and develop stronger coping skills.
Encourage your child to express his/her feelings.
Just because children don’t appear to be worried, doesn’t mean that they aren’t. Children learn to stay positive out of fear that they will cause their parents additional worry (just as their parents are). They may also interpret your own insistence in maintaining a positive attitude as a signal that they aren’t supposed to express their own feelings.
Start the conversation by simply asking your child is feeling, along with reassurance that you want to hear whatever it is they want to tell you, even the ‘scary stuff.’ Give a few extra hugs and reassuring words.
Give all family members household responsibilities.
Children don’t like to feel like they are outsiders, and this includes taking responsibility for chores around the house. Make sure your chronically-ill child also has responsibilities – consistent with any physical limitations – that will help him or her to feel like an equal contributor. Also keep your chronically-ill child in mind when you are planning weekend activities and vacations.
Set boundaries but offer choices.
Chronically ill children often feel as if they are bound by limitations, which can contribute to a sense of feeling less than other children. Provide your child with a sense of control by, where possible, allowing for some choices in daily routines, in diet, and in healthcare choices.
Explain the options and the boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Where appropriate, bring brothers and sisters into these discussions to make them more aware of his/her perspective and to give them an opportunity to make suggestions — don’t forget that they have needs of their own.
Teach all children to be advocates.
Children with chronic illnesses need to learn to speak up for themselves so that teachers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters.
Teach your chronically-ill child how to be a self-advocate through role-playing at home. If brothers and sisters participate, they can also learn how to deal with any stigma in a way that is comfortable and affirming.
Remember that not everything is a medical issue.
Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s diagnosis. Instill the belief in your chronically-ill child that he or she is a multifaceted, multitalented human being and not a disease. And don’t let anyone else turn your child into a disease.
Take care of yourself.
Families facing chronic illness are constantly at risk for stress, and unacknowledged stress interferes with communications. Whether they hear you talking when you don’t think they are around, or simply see the tension in your face and your behavior, children know when something is not right with their parents. They may take a guess at the reason for a parent’s stress and blame themselves.
Make sure your own needs are being met. Take care of your own physical well-being. And find a safe place to talk about how you are feeling, even the ‘bad stuff.’ Find a supportive friend or objective family member outside of your household who can give you an opportunity to release the pressure without judging you.
Remember that your chronically child, and your other children, may need an opportunity to do some ventilating of their own.
Parenting a child with a chronic condition can be challenging. Recognize and accept your own limitations and the limitations of others. Be patient. Don’t expect perfection. And create an atmosphere where all family members communicate with care and compassion.