Kids are observant. When parents or other family members are affected by a health condition like myasthenia gravis (MG), they will pick up on something being wrong. While it’s important to be honest with kids, it’s just as important to tailor your explanation to their age and level of understanding. Here are some suggestions for an open conversation about MG.
Tips for starting the conversation
Planning ahead will help make the conversation easier for you to navigate, and easier for your child to process.
Find a quiet time: Pick a time when you won’t be distracted or interrupted.
Adapt your vocabulary: Use kid-friendly language. Referring to complex terms like “autoimmune disease” or “myasthenic crisis” will just cause confusion. Find age-appropriate ways to say that MG creates weakness in the muscles and makes you feel tired.
Be honest, without upsetting them: This takes some effort. You will need to decide the right level of detail to share about the disease and how it progresses. Don’t overwhelm them with more information than a child their age can handle. But don’t lie, either: Kids are intuitive and will know if you’re not being fully transparent with them.
Read about myasthenia gravis FAQs
Remember to provide comfort
A child’s specific worries will depend on their age — but all kids will need comfort and reassurance.
Reassure them: Start by emphasizing the positives, such as how medication and lifestyle changes can help, that MG is not contagious and that people with MG can have many good days, not just bad ones.
Speak about how the family member is managing MG: Talk about how doctors are helping you or your loved one manage MG. Explain that the family member with MG may need extra rest to deal with symptoms, and how they spend their day will depend on their strength and energy.
Explore ways to spend time together: Talk about ways your child and their loved one with MG can enjoy some time together, with activities that are fun and don’t require exertion. Some ideas to consider are board games, card games, puzzles, drawing, crafting or watching a movie.
Be ready to answer questions about MG
Kids are bound to have questions and a lack of a forum to ask them can lead to anxiety. Encourage them to express themselves and ask questions in the days and weeks following the conversation.
You will need to expect some questions about whether MG can be cured, if you can die from it, if the family member is suffering, how they can help, if they might catch it and what can fix it. There may also be more specific questions about symptoms such as droopy eyelids, or new mobility aids like a cane.
Be ready to reply with honesty, compassion and reassurance and include them in supporting the family member with MG.
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