Family & Friends Unsupportive & Uncaring

    • Anonymous
      November 18, 2011 at 4:57 pm

      Has anyone else on here had family & friends be unsupportive & uncaring?
      I had my Dad & my sister tell me $300 is to much to spend on vision tests for my blurred vision.
      I’ve had very wealthy family members put me down for living with my Mom because I have GBS. And now that an apartment based on income has come available these same relatives are putting me down for using government programs.
      Sometimes I wish this illness would have taken me out early on.
      I lost my soulmate to cancer in 08. I lost my profession, my health & my home due to this illness. And I have no $ for health care except credit cards.
      My family has no idea how hard this has been for me driving myself to the ER when I didn’t think I would make it there. Trying to walk through a big grocery store afraid my legs wouldn’t carry me. When I was alone through the 1st year of my illness.
      I can cope with this illness. But the way people have treated me will change me forever.


    • Anonymous
      November 18, 2011 at 8:45 pm

      [SIZE=”4″][COLOR=”Green”]Dear Lisa.
      I could feel your pain and it is so sad others are too involved to see someone hurting.
      I cannot judge your family but do know familys as you mention. Looseing your loveone and dealing with GBS and it appears you have been doing this alone it is sad but at the same time I admire you for the fight you still have.
      Lisa have you shared your pain with the family or mention to a friend it would be nice to have someone to go with you shopping.
      I am praying to the great spirit as I type. Please let your pain out as this will ease your stress. There are ones here who will share with you and I see us all as a family. Spirtual blessings to you Lisa and I am here every day. Your unconditional friend (Lakoda)[/COLOR][/SIZE]

    • Anonymous
      November 18, 2011 at 9:50 pm


      I just want to send you a big hug.

      So sad to hear that you don’t have the love and support from your family.

      Is there a GBS/CIDP support group in your area?

      If there is try to get in touch with them.

      Perhaps someone else that is going through the same issues as you could met with you and one family member to explain what GBS/CIDP is.

      There are some wonderful handouts that you can get that explain this disease perhaps you could send all your family members a Christmas card with a pamphlet attached!

      take care and remember we are your GBS/CIDP family and are hear to listen and offer support. 😉

    • Anonymous
      November 18, 2011 at 9:52 pm

      I am so sorry your family hasn’t been there for you. Before and somewhat after I was diagnosed with CIDP my family did the same. When we don’t feel good and aren’t fully able to do for ourselves its tough.You’re doing what you can. Many here on the forum have gone through the same as you. I have some great friends who are “my family”.

      Glad you’ve come here. There are some awesome members who listen and offer support.

    • Anonymous
      November 18, 2011 at 10:44 pm

      I understand what you feel, because I feel this myself.
      Some of us are largely or completely unsupported by those in our families or communities, due to the lack of knowledge out there. Name any other medical condition, and I’m sure we’d have a ton of support. Ignorance isn’t just bliss; ignorance is also downright mean.
      But you’ve come to the right place; we know what you’re talking about, and can certainly share your feelings. I sometimes ponder this failure of people to understand and show caring, but I come up with one conclusion…all of us will at times be misunderstood, and have to go it alone, and there are places along our journey where only God can go with us.
      ((( hugs )))

    • Anonymous
      November 19, 2011 at 11:40 pm

      Lisa, Im sorry your going through all that, and here is a big hug for you(((())))). Its hard enough for us to get “proper diagnosis” from the professionals who we have to trust to know enough how to help us let alone lack of support from our loved ones. I really think alot of it stems from “lack of information”. Plus we often “look normal” so people have no idea whats going on inside both physically and mentally. Please see if there is a support group in your area, so many times there is someone else going through what you are and feels the same way. Sometimes it only takes one other person so you dont feel alone. Get some information for your family to read so they can understand a little better and not be so quick to judge or give genera advice on something that is far from general. Keep chatting on here too and everyone on here understands and will support you as best as we
      “cyberly” can 🙂

    • Anonymous
      November 29, 2011 at 6:46 pm

      Hi Lisa,

      You are not alone in that area… check out [url][/url]

      My siblings were shocked when I received disability this year as they thought I was just lazy. This forum has been very theraputic over the years. We are here for each other and please vent any time!!!


    • Anonymous
      November 29, 2011 at 7:01 pm

      To sum it up…”They don’t [B]get[/B] it, cuz they don’t got [B]it[/B]!!!” :rolleyes: