Gary McClain, PhD, is a therapist, patient advocate, and writer who specializes in helping clients—as well as their family members and professional caregivers—deal with the emotional impact of chronic and life-threatening illnesses.
Having a parent who is living with a chronic condition can have a big impact on children. And parents don’t always know how to talk about their illness with their kid. Especially when it comes to emotions.
How is that conversation going at your house?
How diabetes touches your kids
Let’s start by taking a look at the ways in which your chronic condition may affect your children.
Routines—from their favorite foods to their wake-up and bedtime rituals—give children a sense of security. When a parent isn’t feeling well, the routine has to change, sometimes drastically, for a day or two, or for a longer period of time.
Children also count on their parents to behave in predictable ways: to respond to a request for help; to laugh and play; and to help them with their homework. A chronically-ill parent may not be able to respond on a bad day.
Medication regimens can impact children, like when they watch a parent administering a medication or undergoing a treatment that changes their appearance in some way.
People talk. Friends from the neighborhood may be aware that one of the parents has a chronic condition, and they may tell their children. Questions or comments may come up.
Chronic conditions can also impact how parents communicate with each other. And when parents aren’t communicating like they usually do, children sense that something is going on, even if they don’t know what.
Kids can be left with questions that they are afraid to ask, while parents do their best to keep life as normal as possible for their children and assume everything is fine. But appearances can be deceiving. All of this can leave children feeling confused and scared, even if they appear to be taking it all in stride.
Talking to children about chronic conditions
Just because children appear calm doesn’t mean they are. Children learn to stay positive out of fear that they will cause their parents additional worry. They may also interpret their parent’s insistence in maintaining a positive attitude as a signal that they aren’t supposed to express their own feelings.
What it comes down to is that when one member of the household is diagnosed with a chronic condition, everybody receives the diagnosis because they are all affected by it in some way. And the challenges that a chronic condition brings can leave everybody with a lot of feelings. Not talking about emotions doesn’t make them go away.
Are you talking about emotions with your child? If you haven’t talked to your children about how they are feeling, or haven’t done it lately, here’s how to get started:
Find a comfortable place to talk. Sit down with your child in a comfortable and familiar place, like the living room or your child’s room. Just the two of you, away from the TV and the cellphone.
You first. Create an atmosphere of sharing feelings by sharing your own feelings first. Start the conversation by talking about how you feel. Focus on a specific and recent event. Something like: “Mommy wasn’t feeling very well this morning. I was looking forward to running around with you outside today. I felt really sad when I had to stay in and rest. How did you feel?”
Avoid asking leading questions. Asking a question like “Are you scared?” signals to your child that you expected them to feel that way, or that you hope they didn’t. The goal is to encourage your child to talk about any feelings that might have come up. “What was going on with you?” or “How were you feeling?”
Listen. Kids have a sixth sense about when their parents are tuned in and when they are tuned out. And they have a sixth sense about when their parents are open to what they are saying and when they are disapproving or defensive. So listen with open ears, an open mind, and an open heart. Be aware of your facial expressions and your body language. If you’re frowning, or looking away, or crossing your arms, your child may sense that you really don’t want to hear what they have to say.
Reassure your child that feelings are okay. If your child isn’t used to talking about feelings with you or hasn’t talked about how your chronic condition impacts them, then they may need some additional encouragement. “It’s okay to talk to me about how you feel,” or “I really want to understand how you’re feeling,” can help keep the door open.
Be honest, but be aware of limits. When children don’t have any information to go on, they make up their own stories. These stories aren’t grounded in reality and can greatly increase their fears about the future. They can even leave them wondering if they are somehow responsible for their parent’s illness. Give age-appropriate information without going into details that children may not be able to grasp and, as a result, may increase their fear. The best approach is to be reassuring. “I haven’t been feeling very well. Sometimes I am so tired I have to have extra rest.” Or, “I feel achy a lot, and when I do, I can’t do as much as I would like to.” Follow up with: “But I have a really good doctor and she is helping me. I am taking some medicine that helps.” Teens will expect more details, but they also need reassurance.
Set expectations. You don’t have to promise pie in the sky. If your condition results in good days and bad days, or if certain limitations will be ongoing, let your child know what to expect. “Some days daddy is going to have to rest a little bit more. I’ll let you know if I am having a bad day, okay?” Or, “I am not going to be able to play with you as much as I would like to, but we’re still gonna have fun this summer.”
Bring in reinforcements. You can provide additional reassurance by letting your child know what they can count on you for, as well as the other people they can count on. “I will try to come to as many of your games as possible so I can watch with your mom.” “Daddy’s learning how to be a pretty good cook. I’m teaching him how to make hamburgers.” “Grandma said she will come over and help out when I need her to.”
Ask for suggestions for how you can team up. It is human nature to feel helpless when a loved one is not feeling well, and when we feel helpless, we want to do anything possible to feel like we are doing something—anything—to make things better. Give your child the opportunity to do you a favor, something as simple as helping you make dinner or perform other household chores. Better yet, find projects that you can work on together. “Can you help me out by setting the table for dinner? That would be awesome.” “How about if we work on your school project together? You can let me know how I can help.”
Give a few extra hugs and reassuring words. Stay optimistic when talking to your child—beginning with reassurance that the doctor is working hard to help you feel better. And on those times when you run out of words, nothing says it better than a hug.
Mean what you say. Your first conversation about feelings is like a trial balloon with the evidence to follow. So encourage your child to keep asking questions and to keep talking about how they feel. Keep the flow of communication open.
Keep your eye out. Watch for changes in your child’s behavior. For example, if they seem sad, if they are not playing with other children, if they're argumentative, or if they are displaying any other behaviors that are out of the ordinary, these can be signs that your child may be having trouble coping emotionally. It’s time for another talk with your child, and it may be time to reach out to a mental health professional. Don’t go through this alone.
While stressful at times, having a parent with a chronic condition can also provide an opportunity for growth. Children can learn to be more independent and compassionate, and you can develop a deeper relationship with your children that includes sharing of emotions and joint problem-solving.
It all starts with a simple question: “How are you feeling?”