• Posted by BioNews Staff on June 29, 2021 at 5:26 pm

    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?

    Helaine Miller replied 6 months, 1 week ago 6 Members · 6 Replies
  • 6 Replies
  • Susan Jacobson

    Member
    July 3, 2021 at 6:44 pm

    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..

    • BioNews Staff

      Member
      July 6, 2021 at 6:37 pm

      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.

  • Cyndi DeHoff

    Member
    July 10, 2021 at 1:19 am

    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.

  • Deleted User

    Deleted User
    July 10, 2021 at 4:01 pm

    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

  • Tina

    Member
    November 3, 2023 at 3:28 pm

    This is an older group so I don’t know if it’ll be active but I’ll reply anyway. Some of my friends understand as they also have conditions, so we just share our latest booboos and move onto another topic. Others are less interested in maintaining a friendship and I feel less interested in them too as a result. Still others are judgmental since I no longer can keep up with their standards, which makes me feel angry. But I remind myself that’s just indicative of their personality, and there’s no need to feel frustrated. It’s not easy when I see them again, but it’s the old adage, “you can’t control someone’s behavior, just how you react to it”. I still get frustrated with them though. MG is hard enough to deal with on top of someone’s behavior

  • Helaine Miller

    Member
    November 18, 2023 at 2:31 am

    This may be off topic but my biggest relationship change has been with my wife. Since my diagnosis 20 months ago, she acts as if I am just a patient and she’s my caregiver now. We no longer hold hands, put our arms around each other, kiss or *anything* else. I don’t bring it up anymore because why get myself stressed out about something that isn’t going to change. She used to be the polar opposite of how she behaves now. We have been together for 42 years and married for 10 next February, and I still love her but I feel like we’re just roommates now. I’m seriously considering moving to my son & daughter in law’s home up north. She has even said she’s fine with it as long as I help with the bills. I honestly don’t know what I should do. Has anyone else had such a drastic change in their spouse after your diagnosis? What did you do about it? Did it help?

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