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How do you explain MG to people who don’t understand invisible symptoms?
Explaining MG to people who can’t see your symptoms can feel like trying to translate a language that no one else speaks. Weakness, fatigue, breathing changes — they’re real, but they’re not always visible.
I’ve had moments where I tried to “push through” instead of explaining what was happening. It never helped. Over time, I learned that honesty — steady, simple honesty — was the only way to protect my energy and my relationships.
How do you explain MG to people who don’t get it?
What language or examples have helped you feel understood?
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5 Replies
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In layman’s terms; I tell them that my immune system which is designed to protect me from all enemies inside my body has decided to join the other side and view my muscles as an enemy and attack them accordingly. The medicine I take does all it can to suppress those attacks by the rouge immunity warriors but in so doing leaves my body war weary (tired) and also increases my chances of getting infections since I’m battling those who are supposed to protect me.
Normally I’ll get a chuckle but it also invokes conversation. I always urge folks to look it up sometime when they’re sitting around doing nothing since it can strike anyone at anytime. Education is one of the strongest tools we have.
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HA. I love that explanation.
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My kids still don’t understand it no matter how many articles I send them but I’ll keep trying 😎
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I don’t think that’s unusual and may be more of “I don’t want to except something like this could happen” frame of mind. My kids researched it on their own and it shook them up that an otherwise very healthy person could have this happen.
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When I first found out I said to my family “…it’s like winning the death lottery…”…my dark humour in this but oh well lol
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