I finally figured out why I was so mad

Discussion in 'Fibromyalgia Main Forum' started by petesdragon, Aug 4, 2005.

  1. petesdragon

    petesdragon New Member

    I finally figured out why I was so mad at the neurologist for not knowing if I have MS or not. Not that I want MS but at least I would have a recognizable reason for feeling so bad all the time that people would understand. I feel like I have an invisiable disease and that people think I am a malingerer. I see people's eyes glaze over after I talk 20 seconds about my dd's. I either hand them a brochure or say I have a chroic pain disorder. If I hear "well, you look good" or I get tired too,again I will scream. I think I will have to learn the lesson over and over again until I finally "get it" that I do have these dd's, they are real and I am still on this earth for some purpose, even on days I do nothing but sleep.
  2. Rosiebud

    Rosiebud New Member

    CFS and Fibro but at one time it wasnt. People with MS also had to fight for recognition of a 'real' disease, for proper research, disability etc.

    Even if you get a proper diagnosis of CFS and/or Fibro, you are still going to meet people like that.

    Sorry wish I could say a diagnosis would make people treat you better but it probably wont.

  3. tansy

    tansy New Member

    talk about my DDs here, and do a lot of advocacy support work and dessemination of information behind the scenes, on a day to day basis I avoid the terms ME and CFS. I also avoid talking about my illness unless I really to need to let off steam; thankfully I have an understanding sister and friends.

    When most people see me they assume I have spinal problems (I do) or MS (I don't). If they ask I tell them I have spinal problems and neuroborreliosis, the latter baffles them completely which suits me just fine.

    [This Message was Edited on 08/04/2005]
  4. Shirl

    Shirl New Member

    My family knows what I have, and they do hand out the Pro Health brochures for me, but as for people in general, I simply say that I have a 'bad back' most people seem to understand that one :)

    As for that 'you look good' comment, I am a bit sarcastic myself at times, and I will reply: 'well its not my LOOKS I have a problem with'! That usually shuts them up in a hurry.

    Take care, and don't let the world bother you.

    Shalom, Shirl
  5. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I'm curious where you live that you encounter people taht want to tell you about other people they know w/ it.

    I get the same thing here in Ottawa, most people I know, know of someone or have a friend, or friend of a friend who has FM/CFS. when I was first dx'd w/ environmental illness at 28, people hadn't usually heard of that, but most heard of sick building syndrome, so I started saying that instead.

    Every since the dx of fibro, the validation rolls in. My family and most of my friends were very supportive and concerned though. I got so much help through church friends esp., they'd actually come and clean my apt.

    Sorry guys, dont mean to brag or rub it in, I have encountered what you are going through, not often thank God. times are changing though, and in some areas this is well accepted.

    The local Ottawa news has been stellar in reporting about FM/CFS and env. ill. and MCS. they've even interviewed high profile, well moneyed business people who have it, a man and a woman in one interview. I think this may make a big difference for us here who have it. We also have an unfortunately high incidence of it too.

  6. Sue50

    Sue50 New Member

    I feel the need to educate people about it, so if I have people say things to me like - You look tired, do you feel okay? I'm honest with them and very nicely tell them about the FM (the short version, lol) I find most people are very nice about it and are concerned. Some people roll their eyeballs and I just smile knowing that someday everyone will know what this disease is all about, probably when someone famous gets the disease and comes out of the closet with it.