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Partners, family, and friends of those living with MG: I’m curious how you communicate.
What forms of validation and support does the one you care about respond to best when you tell or show them through action?
I appreciate it when others acknowledge they understand and are willing to accommodate or help if I need it, rather than receive questions about the disease too much.
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My family and friends treat me like there is nothing wrong. They expect me to do all the house work, yard work, etc. I am the only one here working for a living of the rest. I am 74, my wife is 76, two daughters, 57 and 58. Same at work. I tell them about my myasthenia but they have no interest even in what that is.
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I have great understanding from the family and they let me do the house chores that I can do. When I was first diagnosed the family, with help of some articles i collected for the interned on systems of the @#%[email protected]$%#^ mg told me to let them know if I felt that I couldn’t do a task and they would take care of it anytime.
However my church family either forgets or ignores my Mg the treat me the same as if I were normal. with two exceptions the pastor and one of the deacons. I think they took the time to educate themselves, so how do you educate them if their not “interested” I don’t know.
My conclusion in my personal case is: I they care enough for me, they will search the available data and educate themselves.
Sorry for the down side of my situation but that is how I feel with my experiences since I have had Mg
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