Explaining the unseen: how to talk to children about MG
Should you keep your diagnosis to yourself? Probably not.
Telling someone you have been diagnosed with a chronic illness is never easy. However, if that someone is a child, things can get more complicated. Regardless of the difficulty, never hide it. Children are remarkably perceptive and can sense when their parents are withholding information.
They often pick up on inconsistencies in explanations or behaviours, such as why a parent might be sometimes absent or unable to engage in certain activities. Attempting to shield them by hiding the truth or offering vague excuses can unintentionally cause more harm. Studies reveal that hiding stress from children doesn’t shield them. It is often passed on (1).
Sylwia Lukomska, who lives with Myasthenia Gravis, and her daughter, Laura, have faced this challenge and now share a strong bond. Sylwia advises parents to talk openly with their children about their condition, tailoring the conversation to the child’s age.
As a young child, Laura was initially overwhelmed, not understanding what was happening, but today, she works alongside her mother within their patient association to help people living with Myasthenia Gravis and their families get the support they need.
Being truthful also means “giving your child the gift of knowing they can trust you” (2).
How to communicate effectively?
It’s normal to feel overwhelmed and not know where to begin, especially when you’re still figuring it out yourself. (1) Your healthcare provider can offer guidance (2), and connecting with patient associations can provide valuable insights from others who’ve been through similar experiences.
Don’t hesitate to seek support. When you’re ready, focus on sharing information in a way that matches your children’s age and understanding.
Keep it simple
Focus on describing how the disease affects you and how it makes you feel. The best way for them to grasp the complexities of Myasthenia Gravis is through concrete examples. It is also important for them to understand that, even when you look fine, you might not feel well.
Make sure they understand that you receive medical support and that you are not alone. Your medical team has your back.
AGES 3-5: Provide specific details of how chronic illness affects you. Be patient, even if you need to repeat the information multiple times. At this age, children may struggle to understand the concept of permanence and think the illness will go away.
AGES 6-12: You can offer more detailed explanations. Children in this age group may also start asking questions about what the future holds.
AGES 13-18: Expect more complex questions and be aware that they may start doing their own research. Since it's easy to stumble upon forums with distressing content, it’s helpful to guide them towards reliable resources, such as an official website, or involve them in a patient association where they can learn more in a supportive environment.
The first talk is only the beginning
Children will react differently to the news. Some may cry, others may ask countless questions, and some might need time to process it all. There is no right or wrong reaction, and it’s important to honour their feelings (3).
Living with Myasthenia Gravis means adapting to a new normal, and your child will adapt alongside you. Keep the conversation open, encourage questions, and remind them that you’re in this together. Over time, they will gain a deeper understanding of your condition and find their own ways to support you.
By choosing honesty and openness, you’re not only helping them understand MG. You’re also teaching them resilience, empathy, and the power of facing challenges as a family.
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REFERENCES :
1. Children can “catch” their mother’s stress - particularly if she tries to hide it. The British Psychological Society. Accessed January 2025. https://www.bps.org.uk/research-digest/children-can-catch-their-mothers-stress-particularly-if-she-tries-hide-it
2. Discussion Guide: Talking to Children About MG. MG United by argenx. Accessed January 2025. https://www.mg-united.com/explaining-mg/discussion-guide-children
3. Children can “catch” their mother’s stress - particularly if she tries to hide it. The British Psychological Society. Accessed January 2025. https://www.bps.org.uk/research-digest/children-can-catch-their-mothers-stress-particularly-if-she-tries-hide-it
EU-UNB-25-00013 – Date of preparation April 2025
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