Why don't people "get" FMS & CFS?

Discussion in 'Fibromyalgia Main Forum' started by PSSERENITY, Jun 13, 2003.

  1. PSSERENITY

    PSSERENITY New Member

    PEOPLE DON'T GET IT, FAMILY, FRIENDS, EVEN WHEN YOU EXPLAIN IN TOTAL. HERE'S ARE LETTERS FROM THE BOOK "CHRONIC FATIGUE SYNDROME, FIBROMYALGIA ANS OTHER INVISIBLE ILLNESSES" BY KATRINA BERNE, PHD IN COLLABORATION WITH 2 MEDICAL DOCTORS.
    I'M SORRY I CAN'T FIGURE OUT HOW TO COPY THE DOCUMENT TO THIS MESSAGE.

    THE BOOK IS EXCELLENT.


    PAT
  2. Mikie

    Mikie Moderator

    More and more, we are getting recognition, it's just very slooooooow coming. I highly recommend that those of us with these illnesses, and our families, get grief counseling. It is even easier for our loved ones to get stuck in anger and denial than it is for us. Therapy can make all the difference.

    Love, Mikie
  3. littlerose

    littlerose New Member

    Hi Pat & All, I once had a pastor who was also my counselor, When I first came down with this nightmare from hell. I was so distraught, confused, etc. with this illiness myself, so I did lots of research to try to understand this. Then I started passing out information about CFIDS/FM because all my friends drifted away,because of fear of catching it, along with me not being able to be or do the things I once did. I talked to my pastor about why don't these people & family want to learn with me & help me throught this, instead of being afraid of it & running away from it? His answer to me was simply,"People are afraid of what they don't know & especially of what they can't see." I said, " Well they will never learn that I am still who I was, but only with a illness. It is up to that person to want to know, & say hey, I am not going to be afraid, if they can endure it & go through it I will choose to go it with them & learn with them. I just told someone last week the best gift they could give me was to jump in here with me, & learn with me, so they will be more able to understand me & this illness, which would also help me cope better with it, just knowing someone cared enough, to take their time to learn about what I & so many other's live with everyday. I do believe somehow, we need to reach people & let them know we are afraid also, & it is okay to be afraid, just don't back away from us, & we can be afraid together,Learn together, cry together, & laugh at all the CFIDS/FM blooper's together!!!:D LOL.
    Have a peaceful & restful, rest of the day!!
    A CFIDS/FM Friend,[-o<
    DeVon @};-
    [This Message was Edited on 06/13/2003]