Step 1: Starting the Big Talk
Honest and Simple
Starting the conversation can be difficult. Putting a name to MG and explaining how it affects the body may help children start to process that information. The level of detail depends on the child’s age, but it’s important for them to know the following:
- How MG affects the body, such as describing problems with how nerves and muscles work together. Using pictures may help.
- How you and your doctors work together to manage your MG.
- It’s not contagious.
- You may look fine on the surface, but MG does not go away and there are days when you may not feel well.
- Living with myasthenia gravis has taught you to pace yourself and plan more, so you can try to live a full, fun life.
Consider describing how you might look or act different because of myasthenia gravis so they know what to expect. Explain what it feels like for you. This may mean saying something like it hurts your body in ways that they sometimes cannot see with their eyes. And it can change quickly, so that feeling good and bad can feel like a roller coaster going up and down suddenly.
In being truthful about the difficult parts of living with myasthenia gravis, you are giving your child the gift of knowing they can trust you. When adults make well-meaning promises such as “everything will be fine” and then it isn’t, children can realize that you are not giving them reliable information. As painful as it may feel to be unable to protect a child from difficult situations, it shows them you believe they can deal with it and can enhance their trust in you.
While this is the approach I generally recommend to parents, it never hurts to get a second opinion. If you have concerns that your child may not be ready or able to discuss your condition, you may want to reach out to your care team for support and to discuss an approach that feels right for your family.
Here are some communication tips based on ages and stages. These are broad categories with general suggestions based on child development. You know your child best, so do what you think fits. However, it’s always a good idea to consult with your child’s pediatrician for guidance on how to have this difficult conversation with your child.