Comments on: Searching to be believed http://workingwithchronicillness.com/2007/01/29/searching-to-be-believed/ Sun, 12 Oct 2008 22:41:29 +0000 http://wordpress.org/?v=2.5 By: Diana http://workingwithchronicillness.com/2007/01/29/searching-to-be-believed/#comment-62 Diana Fri, 09 Feb 2007 07:27:39 +0000 http://keepworkinggirlfriend.com/2007/01/29/searching-to-be-believed/#comment-62 Dear Rosalind, Thank you very much for this important reminder. I wasted a lot of time trying to get people in my life and doctors to believe I was ill. I think this only contributed to my health problems. The real breakthrough came when I myself finally believed I was truly ill. Only then could I start doing more for myself in terms of thinking about getting my life back on track. However, I realize that I am very lucky to have several very good doctors who are working with me, while many people cannot get even one doctor to serve as an advocate; this can have horrible practical implications. I don't worry anymore about what others think, I ignore all the "helpful" advice from family and friends, and finally I feel much more grounded. My illness has become an intensely personal experience. Diana Dear Rosalind,
Thank you very much for this important reminder. I wasted a lot of time trying to get people in my life and doctors to believe I was ill. I think this only contributed to my health problems. The real breakthrough came when I myself finally believed I was truly ill. Only then could I start doing more for myself in terms of thinking about getting my life back on track. However, I realize that I am very lucky to have several very good doctors who are working with me, while many people cannot get even one doctor to serve as an advocate; this can have horrible practical implications. I don’t worry anymore about what others think, I ignore all the “helpful” advice from family and friends, and finally I feel much more grounded. My illness has become an intensely personal experience.
Diana

]]> By: Rodney http://workingwithchronicillness.com/2007/01/29/searching-to-be-believed/#comment-54 Rodney Mon, 05 Feb 2007 21:05:31 +0000 http://keepworkinggirlfriend.com/2007/01/29/searching-to-be-believed/#comment-54 Dear Musing, Your struggle is familiar. I have migraines, Celiac Disease (an autoimmune reaction to eating wheat) and a rare muscle disorder called Periodic Paralysis. Getting all three diseases correctly diagnosis took 15 years! As each disorder finally got sorted out, I felt vindicated once again. The search was very lonely. I did find a wonderful support group for the Periodic Paralysis. This group has continued to be very helpful to me, and others like me all over the world. Like you said, having a diagnosis is very comforting, and it helps focus my doctors on providing good medical care. Dear Musing,

Your struggle is familiar. I have migraines, Celiac Disease (an autoimmune reaction to eating wheat) and a rare muscle disorder called Periodic Paralysis. Getting all three diseases correctly diagnosis took 15 years! As each disorder finally got sorted out, I felt vindicated once again. The search was very lonely. I did find a wonderful support group for the Periodic Paralysis. This group has continued to be very helpful to me, and others like me all over the world. Like you said, having a diagnosis is very comforting, and it helps focus my doctors on providing good medical care.

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