How do you handle unsolicited advice about MG?
Have you ever received unsolicited advice about your MG? If so, what was the advice and how did you respond?
Not well, I stumble thru and later get angry I didn’t do better
It sounds like you probably relate to the following article: https://myasthenia-gravis.com/living/choosing-compassion. In what ways do you wish you had done better?
Jodi, Team Member
Many tell me it is all in my head get more exercise when it is my leg muscles that are mainly affected
I am so sorry to hear others speak to you in such a dismissive and insensitive manner. I can imagine how frustrating and hurtful these comments are. I truly hope you know our community cares and understands - you are not alone. How are you feeling this week? I hope it has been kind to you. I shared an article that may be something you would be interested in reading - https://myasthenia-gravis.com/living/choosing-compassion. Again, we're here for you anytime. Hugs, Jessica (Team Member)
My family told me that I have gotten lazy and just need to exercise. I sent them all information on Myasthenia Gravis. But it is so disheartening to have your whole family think you are lying/lazy/etc. Ironically, my paternal grandmother had it but she could still walk very well, whereas I have a hard time. Legs shake, buckle at the knees, etc.
I'm sorry to hear that you're going through this. It must be incredibly frustrating to have your loved ones not understand what you're going through, especially when you are making an effort to get them to educate themselves about myasthenia gravis and how it affects everyone uniquely. You're not alone in this. I think you may enjoy the following two articles: https://myasthenia-gravis.com/living/choosing-compassion and https://myasthenia-gravis.com/living/chosen-family.
Jodi, Team Member
Yes, I’ve received unsolicited advice about my MG (Myasthenia Gravis). One piece of advice was to just “rest more” or “try natural remedies” to cure it. While well-intentioned, I explained that MG is a chronic autoimmune condition that requires specific medical treatments, and resting alone won't address the underlying issues. I usually respond politely by sharing basic information about the condition and how treatment is managed by healthcare professionals to help others understand it better.
Hey there! It's unfortunate that people sometimes offer well-intentioned but misguided advice about managing chronic conditions like MG. It's great that you respond politely and share information to help others better understand the realities of living with MG. Keep advocating for yourself and others with similar challenges. Your approach helps educate and raise awareness. I think you will really resonate with the following two articles: https://myasthenia-gravis.com/living/avoid-saying & https://myasthenia-gravis.com/living/choosing-compassion.
Jodi, Team MemberI often find that the advice giver cannot even pronounce Myasthenia Gravis
