Myasthenia Gravis News Community Forums Caregivers, Family, and Partners What Forms of Validation and Support Do Your Loved Ones With MG Respond Best To?

  • What Forms of Validation and Support Do Your Loved Ones With MG Respond Best To?

    Posted by MG Community Member on May 18, 2022 at 10:00 am

    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.

    MG Community Member replied 3 years, 11 months ago 2 Members · 2 Replies
  • 2 Replies
  • MG Community Member

    Member
    May 18, 2022 at 8:01 pm

    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.

    • MG Community Member

      Member
      May 19, 2022 at 3:35 pm

      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 @#%$@$%#^  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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