Coming OUT of the Closet with CFSFM

Discussion in 'Fibromyalgia Main Forum' started by cressida, Oct 20, 2008.

  1. cressida

    cressida New Member

    I've had enough of trying to hide this! I just felt like such a loser, because I looked fine and I could always see the doubt in people's minds when I said I couldn't do something or missed an appointment or couldn't work. I know people were thinking that I was lazy, because I could walk fine (and the reason that I can is because this isn't arthritis and I don't have swelling, constricting me - except in the morning when I wake up).

    I knew that many people considered FM to be an 'all in your head' illness, and a part of me came to believe them. Someone, who was once a friend, even said to me that they believed that I fabricated my illness, by looking up symptoms online and then using them as my diagnoses! Like I would do that? Like I would wish this on anyone (except perhaps that particular person ;)!

    If this were a case of 'mind over matter', I would certainly be feeling much better, because I listened to all of those people who gave all of their advice (why don't you just exercise more, etc. etc.). Ummm - hello - I used to love being active and playing sports. Do you think I just decided to quit doing everything and be 'lazy' because I wanted a free ride? This is no free ride and I think we all know that!

    Consequently - I stopped telling people that I had FM. I stopped talking about it. I went through things painfully, suffering and believing that I could get through it if I didn't 'allow' it to get in my way (like I had a choice)! I'm done with that now. I'm on disability because I can't be depended on for anything. I may have a half decent day here or there, for which I'm very thankful - but it doesn't mean that the next day is going to be the same. In fact, I usually do WAY too much on that good day - just to catch up - and feel worse than ever for the next several.

    I've now decided that pretending I'm fine just isn't working for me anymore, and I AM coming out of the FM closet. I've got to stop worrying about 'what people think' and start spending more time dealing with what I can for myself, instead!

    I know there's a stigma that comes with the word 'Fibromyalgia' because doctors wouldn't recognize it for so long. I also know that's slowly changing and that allows us to suffer this ailment with some dignity. Like we have a 'right' to our pain and discomfort! We have a right to be believed!
  2. 3gs

    3gs New Member

    YEAH for you

    this letter could go with the ones on how to explain fibro.

    you keep on trucking!!!!!!!!!!!
  3. Beadlady

    Beadlady Member

    for putting yourself first!!

    I know it is hard not to worry what other people think & say. I've pretty much learned to keep stuff to myself except I babble to my husband and on this board. {I'm not sure if husband really listens} but I know I have friends on this board who understand.

    Take care of yourself and remember stress makes it worse.
  4. boltchick

    boltchick New Member

    I am glad that you are taking care of you. I hope some day that the stigma associated with this illness will be lifted. Some of us just don't talk about it because of the way the medical profession reacts to many of us. I only talk about it to my husband and my sister, and even then I try not to talk about it too much. I used to go places more with my friends, but I recognize my limits and try not to blame myself for not being able to do as much as I would like to. And I also look forward to feeling better in the future and I hope you are able to reach that goal some day very soon. Kim :)

  5. misskoji

    misskoji Member

    I'm so happy that your are being proactive. We are dealt with the hand we have, and it's we just have to play it. I'm proud of you and your post. Kudos dear! You come first, your health and well being comes first. It's hard to let go of those worries of what people think or say. But they are not feeling what you are feeling, and you know what's best for you!

    Just think, you are STRONG! The others who have doubted you, imagine how they would deal with this. Not nearly as dignified as I think you are handling it I suspect.

    I've lerned to not complain too much to family, ect. I tend to just stay away from those toxic people who make me feel worse, we don't need those people in our lives. We need people who have open minds and hearts.

    I'm glad your here and hope you find some good information and talk to others that truly do understand you.

  6. jole

    jole Member

    I know the ads on tv about FM are not the best, but at least they give others the realization that this is a true disease, and one that we would not want to have. I wish they would be more realistic and show more fatigue/pain, but they are a start.

    People will believe what they want to believe, and I had a very hard time at work before needing to quit my job. I had to hold onto walls, furniture, etc. to walk due to coordination and balance problems, and everyone looked at me like I suddenly became possessed.

    Oh well, we know the truth, and even though their response to us hurts, it is better to be truthful to ourselves so we can continue to heal. Good for you!