How do you all expain these illness to friends?

Discussion in 'Fibromyalgia Main Forum' started by cyberamy, Apr 7, 2003.

  1. cyberamy

    cyberamy New Member

    and family. I don't really want to be really lengthy just short and simple. Family and friends don't understand and I don't want to come across sounding like a hypochondriac. Alot of them are wanting to know and I have avoided them for a while as I haven't felt up to visiting or socializing.I feel like they are going to label me (if you know what I mean) I have FMS, CFS and a positive ANA. Thanks sooo much!
    Amy
  2. sofy

    sofy New Member

    I'm the healthiest sick person I know. This means all the slips of papers the doctors get back from the labs say I am just fine except for the sleep test which says "she cant stay awake" and wedont know why.
    I then say lets talk about something else cuz I dont want to dwell on my health unless I have to.
  3. kgg

    kgg New Member

    In one of them, (I think the first), she has sample letters to friends, family, physicians, etc. explaining this DD. I think they are very informative, sweet and to the point.
  4. Plantscaper

    Plantscaper New Member

    My non-understanding family tend to start to grasp what I go through if they read about it in a magazine like the "Seabiscuit" article, the author of which has CFS. The film, I Remember Me, may be just the resource to help with that, but I have not seen it yet..I have requested that my local library order it and you could get yours to do that..so the resource will be there for anyone suffering with these DDs.
  5. seaview

    seaview New Member

    this may sound like a pity party but quite frankly I really don't have any friends any more. There was a time that I was very involved with other parents and I was the organizer and so on.....But, since my health has gotten worse and I no longer can keep up with their scedules I have found that I am all but forgotten. I see some occasionally out in public but it is a simple hello.No questions asked. My life has changed so much. My husband and I do not even speak anymore. I choose not to because he turns all conversations into a bash me time so I just try and avoid him. So sad as I never would have thought life would be like this. This is why this board is so important to me. I am very,very lonely. Even if my so called friends did include me in I couldn't keep up anyhow so it is just as well. I think for the most part since we look ok,don't have a diagnosis of something life threatening, or such that they just don't get it. I wouldn't wish my life on anybody. So, I try to get my strenghth from God who will never leave me or forsake me. I think if they really want to understand there are plenty of books and articles to help them along to understanding. For the most part though I don't think they really do want to understand.They just want us to act as though all is ok. I hate what this has done not only to me but to my children and marriage also. I have alot of regrets. If I had known this is a hereditary thing I wouldn't have had children or even married. I dread the thought that any of my kids might suffer. My mom has Fibro and I see how it has devastated her life.....so very sad..
    I guess you have to know if the person asking really wants to know or if they are just being courteous. Maybe you could put together a little handout that would shed lite on your health problems in a easy to understand way. Then copy and hand out as needed.I hope you find support and love from those who really care and are willing to stand by you through the good and bad days. Blessings to you......Kathleen
  6. starstella

    starstella New Member

    great poem or whatever you call it. Kind of sums it all up.
  7. cyberamy

    cyberamy New Member

    And thanks for all the great info. This is such a complicated invisable illness so didn't quite know how to approach it. All of your ideas were great!
    Amy