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.
A client who I’ll call Tammy had an unexpected question from her third grader: “My friend’s mommy told her that you are sick. Are you going to be okay?”
Another client, who I’ll call Mark, heard a similar comment from his teenager: “Some of the guys were asking about your health. They noticed you didn’t seem to be feeling very good. I didn’t know what to say.”
Other parents talk. Their kids listen and repeat what they heard. Or kids talk about what they observe. And not always with a whole lot of tact.
Your children are left with their own questions. For you.
One of the things that parents who are living with a chronic condition often tell me they dread is when their children are asked difficult questions—or hear unkind comments—about their chronic condition. You are dealing with enough as it is, right? Now, how do you handle the effects that living with a chronic condition has on your child’s life?
Here’s how to have that conversation:
Stay calm. Your child’s first words about what was said are not the whole picture. But it only takes a few words to push buttons with you, and leave you with all kinds of images: your child being picked on because of your chronic condition, being talked about behind your back, you and them unfairly judged! Breathe. Remind yourself not to jump to conclusions. And avoid bringing unnecessary emotions into the situation.
Start by listening. This is a time when your child needs to talk. He/she opened the door by telling you what happened. Now give your child a chance to tell the rest of the story. It’s as simple as saying: “Okay, let’s talk. Tell me more about what happened.” Keep your ears and your mind open.
Encourage your child to talk about feelings. Interactions that children have about their parents bring up feelings. Especially if topics were discussed that aren’t always discussed at home, including your health. Feelings may be coming up for your child that they haven’t felt comfortable expressing before or never had the chance to. This can be an opportunity to help your child express feelings they have about your health for the first time. Ask: “How did you feel when your friend said this about me?” Or “How does it feel to tell me about this?” And again: listen.
Offer to answer questions. Keep in mind that your children may be hearing misinformation from other kids, either because the information was wrong or because the kids are misinterpreting what they heard. So your children may be reacting to information that wasn’t correct in the first place.
This is an opportunity to learn more about what they understand and don’t understand about your chronic condition, including any misconceptions they may have. So give them information you think they are able to understand, based on their age and maturity level, and invite them to ask questions. It’s as simple as: “You must have some questions for me. Go ahead and ask.” If you need some help answering them, you can simply say, “I need to get some help answering that question. I’m going to do that.” And then do some research, talk to a healthcare professional, or get some support from a parent who has been in a similar situation. But if you say you will follow up, then be true to your word.
Provide reassurance. You don’t have to create false expectations for your child. But you can provide reassurance. First, let them know you aren’t trying to hide anything from them. “Whenever you have a question for me, ask away. I am here to talk whenever you want to talk.” Let them know that you aren’t afraid of feelings that might come up. “If you have some feelings that you want to tell me about, then that’s okay, too.” And reassure your child that you are taking the best possible care of yourself. “I am doing everything the doctor tells me to do. Every day.” While you’re at it, children will also feel reassured by knowing what they can do for you. “Here’s how you can help me….”
An uncomfortable situation with another child at school can open the door to a new level of communication between the two of you. And also keep in mind that children with a parent who is living with a chronic condition have a special opportunity to learn what it means to be compassionate, to consider someone else’s needs in addition to their own and to be okay with differences. So listen to your child. And talk. Be a team!