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    • #16391
      Michelle Gonzaba
      Moderator

      When a life-changing event happens, like being diagnosed with MG, we sometimes lose friends because of them. It could happen for many reasons. Sometimes the friend can’t handle the difficulties of the disease while others don’t even want to bother with making any accommodations.

      Have you lost any friendships or relationships because of MG? Why do you think those friendships/relationships changed after being diagnosed with MG? Is it a good thing to let those friendships/relationships go?

    • #16401
      Susan Jacobson
      Participant

      Unfortunately, it certainly has changed things. I still see my friends, but they have much more stamina than I do. Even meeting for lunch for 2 hrs tires me out. They often want to do more than I’m able to do- ie. take a bus to the city, eat out, go to a play, walk around the city..forget that. Even walking around a mall after supper is too much for me.   Voice and palate issues have a major impact as well, as I start feeling oral weakness (in my palate) if I talk for a few minutes on the phone.  I have to make sure not to talk for any period of time to more than 1 person a day. If I overdo it, the weak palate feeling can remain for weeks. And if I really push it, my swallowing is affected.  It’s quite isolating..

      • #16411
        Michelle Gonzaba
        Moderator

        I can totally relate to this, Susan. When my weakness was at its worst, I really had to change the way I visited friends. And many of them really didn’t understand my illness. Some even thought I was overexaggerating my weakness! It can feel very isolating, but I hope this forum helps you feel a little less alone.

    • #16448
      Cyndi DeHoff
      Participant

      I can relate to both of you and your experiences.  I also would add that my relationship with my own sister has changed.  We were close and always enjoyed doing things together despite not living in the same town.  We would make a point of getting together several times a year until I got sick five years ago and that has basically stopped.  We talk on the phone and text now and then, but I am no longer included in her plans for trips or activities etc.  I am able to travel, but I need to take a vent, meds, rest a lot during the day and plan for the unexpected etc.  I have no problem doing what I can and saying I will catch up with you later.  I feel tossed aside because I cant do physically what I used to be able to do.  I also have Celiac disease and my sister eats like crazy and its just one more thing I have to consider outside of the house.    They say that friends can come and go, but I didnt see it coming with my own sister.

    • #16449
      Anonymous
      Inactive

      Kudo’s To beauty of your post. At the height
      of my illness I was unable to walk or stand without aid.
      As my body functions worsened even our daughter kept away. My wife, the Saint she’s been to me for going on 50 years never left my side.
      It’s hard to understand, except 2 friends We my wife and I were alone.
      Since my gMG has lessened with plasmapheresis the friends who abandoned this ship have by and large stayed away.
      GOD has given us new people in our lives. An understanding group
      Maybe our age (70’s) played a part in my being able to write this in complete honesty. Thank you

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