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How Do You Approach MG With Curious Children
Children are often well observant. It wouldn’t be out of the ordinary for a kid to ask about our mobility assistance, need for frequent breaks, noticeable eye droop, and speech difficulty. I got to thinking about this question the other day when I respectfully denied gum from a friend, letting them know it’s one thing that makes my mouth weak, and the child with us asked about it.
How do you respond to children when they ask questions regarding your MG, symptoms, and adaptions?
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5 Replies
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I’m always honest and age appropriate. For a tracheostomy tube I told them it helped me breathe. For MG, I tell them my muscles are sick. Some kids get concerned because I don’t get “over it” or “better” like their colds… I let them know that it’s really rare for people to get sick like this and kids can’t get sick from me.
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I havn’ told my 12 year old daughter yet. She knows It’s been awhile that I am not feeling well but doesn’t know the details. As you can imagine. she keeps forgetting it because I am trying to perform as before. And I am wondering if this is a right thing to do or not??!!??!!
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That is a very personal ultimate decision, of course! However, there is no harm in being open with your daughter so she doesn’t become silently worried. Be as honest as you feel her level of maturity is ready for, or let her do the question-asking. To keep emotions neutral towards the situation, as it appears you are trying to keep all of this normal for her, add a positive to balance anything scary, worrisome, or overwhelming you may share with her. Such as, when sharing treatment you may go through, talk about the chance at improvement and that you are just partaking in self-care. Talk about the life lessons you are learning from this disease. Keep it uplifting. When you have a better day, let her know it is because of the treatment and rest so she can start associating healthcare as not scary but caring for yourself. https://myastheniagravisnews.com/columns/my-son-speaks-out-living-with-his-moms-myasthenia-gravis/ This new article may also interest you 🙂
– Jodi, Team Member-
Jodi I agree. I have had MG for five years. Honesty is the best policy tempered to the age and development of a child. As a child psychotherapist I tell children that they sometimes think that they in some ways contributed to my illness and I let them know my disease is not something they caused.
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It is one one the craziest moment right now. Sitting in a cafe and reading your massage and I am dealing with lots of emotions, worries, anxieties and the sense of restlessness. Reading about how I can deal with my daughter is challenging and emotional involving. Steal couldn’t get used to the idea that how fast I can shift from one mood to another.
Thank you for your support.🙏
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