Talking to Your Children About Fibromyalgia

Margaret struggled to stop her tears. Jeff, her 10-year-old son, would be bounding through the door any minute, full of energy, smiles, and chatter about how many strikes he pitched at his Little League game. She had promised herself that she would go to this game no matter how much she hurt, how tired she felt, or how difficult it was to move—yet here she was, slouched over the kitchen table, barely able to hold her body upright. She had never spoken to Jeff about fibromyalgia because she didn’t know where or how to begin. She barely understood all the ins and outs of FM herself, so how could she explain it to him?

 

Adults often underestimate a child’s ability to understand a situation and forget that the ability to cope or “bounce back,” referred to as resiliency in psychological research, is what allows children to adapt and grow in a healthy fashion. In an effort to protect a child from sad or unpleasant information, adults often try to shield them from the truth—forgetting that, from a very early age, children demonstrate an ability to know when something is not as it should be. They can tell when their parents are upset with each other, even if they witnessed no argument. They can sense when a parent or grandparent is not well, even when everyone is careful not to speak about the subject when the child is within earshot. Nothing gets past a child.

 

So, rather than trying to shield your child from the truth about FM, follow these steps to help your child understand what you’re going through.

1. Sit down with your child someplace quiet and free of distractions.
2. Make eye contact with your child, and try to place a comforting hand on your child’s arm or leg. (If the child does not want to be touched, do not take it personally. We all know what it feels like to not want to be touched sometimes.)
3. Be open and honest. Children know when an adult is trying to sugarcoat the truth or slip something past them.
4. Use language your child will understand. Explain that the reason why you can’t do as much as you used to, or why you get tired more easily, is because you have have something called fibromyalgia. When they ask what that means, relying on the Latin derivation of the word comes in handy: “fibro” means fibrous tissue, “my” means muscle, and “algia” means pain.
5. If you start to cry while you are talking, take a moment to regain your composure and let your child know that grown-ups cry sometimes when they are talking about something that upsets them, and that it is perfectly okay. Your child may become tearful seeing you cry, but that’s the perfect time for a hug.
6. Be clear that, when you sometimes don’t do an activity that you planned on doing, it’s not because you choose to alter plans, or because you don’t love your child; it’s because of excessive pain. Let your children know that you love them no matter what!
7. Allow your children time to ask whatever questions they may have. Answer these questions as honestly as possible and at a level they can understand. Be careful to not give them more information than they need. If you give an answer, and it is not enough, the child will ask for more information.
8. Keep your initial talk short—under 10 minutes—because children’s attention span is limited. You can always revsiit the topic at another time. This is a case when you really need to follow the child’s lead. Often kids like to absorb information and think about it for a while before asking additional questions.
9. Last, but certainly not least: there is no need to argue with your child’s feelings. Remember, those feelings belong to them, and it is not your job to make them see things your way. There are more ways to see and understand things than just from your own point of reference.

Remember, the goal here is to be honest and to produce a strong sense of belonging and understanding for each family member.

Shelley Slapion-Foote, diagnosed with fibromyalgia in 2000, is a licensed psychologist in Florida.

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