Talking to your children about your myasthenia gravis diagnosis

Last updated Aug. 8, 2025, by Jordan Wold

 

You may already be accustomed to managing the impacts that your myasthenia gravis (MG) diagnosis has on your life. But even if you feel comfortable managing your MG, talking to children about chronic illness is an entirely different matter.

Although explaining MG to kids can be complicated, talking to children about your MG diagnosis is important. Having age-appropriate illness explanations may help ease fear, build trust, and support your child’s understanding as you navigate parenting with MG.

Why it’s important to talk to your children

Explaining autoimmune disease to a child may be the last thing you want to do, especially if your MG diagnosis was recent. Still, it’s an important step for you to take, allowing you to return to doing what you love with your family by your side.

Talking to your child about health conditions may also reduce fear and instill resiliency. If you can provide age-appropriate explanations to your kids, helping them recognize the signs and symptoms of MG, they may be less fearful that any sign of sickness is a sign that your MG is worsening.

Prepare for the conversation

Chronic illness and family communication can co-exist, but knowing when to tell kids about a diagnosis like MG is almost as important as knowing what to say. Prepare for the conversation by making key decisions, such as having age-appropriate explanations for illnesses at the ready.

For example, if you have a 14-year-old and a toddler, their differing maturity levels and emotional needs suggest that you should have separate conversations, each approached from different perspectives.

Some key ways to prepare include:

• researching MG on your own ahead of time
• choosing the right time and a peaceful setting
• planning out what to say
• anticipating possible questions.

Similarly, you may want to consider whether anyone else should be present in the conversation, such as another parent or a support person, like a grandparent.

How to explain myasthenia gravis in kid-friendly terms

Because MG has different types, causes, and symptoms, it is best to explain it in kid-friendly terms.

Helping children understand rare diseases may not be easy, no matter how old they are, but fitting your answers to your children’s ages might help them process the information as best as they are able.

For young children

For younger children, keep your explanation of MG broad, while staying honest about the fact that you have a disease.

Talking to children about chronic illness at such a young age may mean that you use simple explanations, talking about the body by using analogies that involve characters or stories they are familiar with.

Emphasize that the disease is not contagious, and that they won’t get sick from you. Most importantly, remind your childrn that you love them and that this illness won’t stop you from being their parent.

For preteens

If you’re explaining your diagnosis to a preteen, respect your child’s advancing skills for reasoning and empathy. But understand that your child’s reactions may be unpredictable.

Share relevant details about your diagnosis with your children, and reassure them about any changes they should expect.

For teens

You may be able to encourage a more open dialogue with teenagers, including discussing medical terms and treatments if appropriate.

While you should always encourage continued questions about your MG, you may want to share more with your teenager over time and not all at once, depending on how maturely your child can absorb this information.

Similarly, if you’re able to share more detailed explanations of what you’re going through, you should encourage the same from your teenager. Give your teens space to share their feelings and potential frustrations as well.

Address their feelings and concerns

No matter your child’s age, there is a range of reactions you might see after sharing your diagnosis.

While you know your children best, some common reactions may include fear, anger, sadness, and confusion. Validate their emotions and let them know that living with myasthenia gravis is a team effort, and you will be there for each other as a family.

Reassure them with as much information as you feel is appropriate to share about your care team. Also, remind your children about the support systems present in your lives, and encourage them to look forward to future plans together.

Encourage ongoing communication

Let your children know that even though this is the first time you are talking about your MG diagnosis, it doesn’t have to be the last.

Remember to provide your kids with age-appropriate explanations and updates about your illness as your condition or treatment plan changes. Even after you know how to talk to your kids about your illness, it might be difficult to broach the subject regularly.

Do what you can to maintain consistent updates and communication without overwhelming your children with excessive information.

When to seek extra support

If your treatment is making it difficult for you to attend to the daily emotional challenges that parenting with MG may create, you might want to consider reaching out to resources that can provide support for families with MG, such as:

• support groups
• school counselors
• individual and family therapy providers.

Professionals or peers in the MG community might be able to provide tailored methods for living with chronic illness, as well parenting advice that’s relevant to you.

You know what’s best

You know your children best, so if it feels like the right or wrong time to tell your kids about a diagnosis like MG,  trust your instincts. Just remember to provide age-appropriate illness explanations, encourage ongoing communication, and seek support for families with MG if you need it.

Know that understanding how to talk to kids about illness would be useful even if you didn’t have MG. That’s because, in the end, myasthenia gravis parenting tips are simply good parenting advice that happen to be tailored to your family’s specific situation.

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Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.