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Monday, April 25, 2011

My fibro is not like yours.

It seems that even the fibro community does it. Of course, society does it. Our families do it. We question fibro. Statements I have heard (from fellow sufferers):

1. If you do not have x symptom, then it isn't really fibro.
2. If you really had fibro you could/could not work.
3. What do you mean you do not work? I do.
4. That is crazy. If you had fibro you would not be able to do (insert anything)
5. That med does not work for fibro. You must not really have fibro.
6. If you really had fibro you would love/hate massages.
7. Chiropractic is helpful/hell.
8. Pain killers work/do not work.
9. I was cured by x. You don't want to get well or you would try it.

and at #10: I had fibro once. Once.

Other bloggers have stated similar encounters and are as frustrated as I am at times. What makes this so hard is we cannot seem to cohesively rally together. Can you imagine what would happen if we could get the momentum that the Susan Komen for Breast Cancer movement has? It would be astounding.

Now, I am not trying to bash anyone. I am just making an observation. However, I believe that we as a group must, and I mean MUST, band together or we will never be truly heard. We will be slaves to the newest fad treatment and worse, out and out dangerous scams.

Let's try and bridge the gap this May 12 and truly make a difference. I am sending a press release to my local paper and trying to develop a local support group. What can you do?


  1. Great post! I completely agree with you. United we stand, sister!

  2. Hey sweet girl. Two of my dearest friends have Fibro. I don't know how they do it. You are brave and beautiful!
    Thank you also for the authentic and brave comment you left on my blog- powerful. Thank you friend.

  3. Hi, I really believe this too and just this year started Fibro Blogger Directory so we can hopefully create a united voice. please join us.
    "Blogging is a powerful tool and by connecting we can be a stronger voice."