Learning that your child has a disability or chronic illness can trigger powerful and conflicting emotions: powerlessness in the face of the disease or disability, fear of what is to come, and the relief of finally having an explanation.
As with everything else in parenting, there is no simple formula for coping with these feelings. There's just research, practice and patience.
Although you may feel overwhelmed right now, remember: You're not alone. You have resources, including your child's doctor, your family and friends, and other parents facing similar situations.
To help get you started, here is some guidance from the American Academy of Pediatrics (AAP) and the American Psychological Association.
Learn as much as you can about your child's condition. Accurate information will help you better understand and react to your child's symptoms so you can keep them as healthy as possible. The more information parents and children have, the less frightening things will seem, notes the AAP. Knowledge can help both you and your child feel more in control of the situation.
Just be sure that the information you're getting is reliable. Not all information on the internet is good information.
When you have questions, turn first to your child's physician. They can steer you toward trustworthy books and websites. The AAP offers a great resource for parents at healthychildren.org.
Do your best to keep a positive perspective. For example:
- It's normal for parents to feel guilt and sadness. Anger is also common. Tackling your child's illness directly is the best way to move forward. One study of parents of children with cancer found that parents who focused on the problem and took action had lower levels of depression and anxiety than parents who avoided the situation.
- Manage your stress. A study of children with type 1 diabetes found that children had higher stress and depressive symptoms when their parents were reporting high levels of stress.
Take care of important relationships. The financial, emotional and physical stress of caring for a child with a disability or chronic illness can take a toll.
Maintain open, honest communication with your partner and any other children you may have. Talk to kids at a level they can understand. Listen to other family members too, and try to understand how they're feeling.
And know that, sometimes, difficulties bring out the best in families. They can thrive as they are united by their love for the child. A child with health problems can bring parents and other family members closer. Managing a child's chronic condition may provide them with a sense of cohesion, mission and pride that strengthens familial bonds.
Ask for help when you need it. Seek out the resources available to you. This may be in the form of babysitting from friends, guidance from a spiritual counselor, or a monthly support group meeting with other parents in similar situations.
Reviewed 11/6/2023