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View Diary: #HeardWhilstDisabled (14 comments)

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  •  There are none so blind as those who will not see (11+ / 0-)

    My daughter is only thirteen, suffering juvenile primary fibromyalgia, which a more horribly painful and disabling disease that I ever knew or imagined.  The suspicion and contempt that both she and I have experienced from relatives, school officials, doctors, etc are more than enough to last a lifetime.

    - She is faking it or exaggerating.   It's all in her head.   She is just depressed.  

    - I, as a parent, have Munchausen's By Proxy and am encouraging her to act sick.   That's what you get called when you advocate for your sick child.   You are crazy and exaggerating.

    - If she would just run marathons or do some yoga, she'd get better.

    - She is abused

    - "Suck it up"
    * from the temporary school nurse who had been informed that she had a chronic pain disorder, after she suffered a horrible flare of CRPS, and then someone dropped a heavy book on her bad foot.  She was nearly hysterical with pain, and we had to wheel her out of school in a wheelchair.

    - "Well, at least now we know that the pain you've been complaining about is real"  
    * heard from her pain management doctor, after working with a pain clinic for three years for treatment for complex regional pain syndrom which robbed her of the ability to walk on one leg for over three months, and then treatment for fibromyalgia, after her pain hit during a biofeedback session and blew off the top of the chart.  The implication being that her pain management doctor had believed for the past three years that she was faking her pain.

    We have come to expect to be treated this way, even by doctors.

    For the patient, pain and disability is a fact of life.  

    For the person who is observing or interacting with the patient, disability is a religion that you can choose not to believe in.    

    •  So sad! (4+ / 0-)
      Recommended by:
      FloridaSNMOM, DFWmom, PSzymeczek, TKO333

      My husband gets lots of these.  He's got a busted back from a car wreck, and is in constant intractable pain.  At least his pain doctor takes it seriously!

    •  I'm so sorry:( (0+ / 0-)

      I know all about what it's like. Every doctor I ever saw for weird pain when I was growing up said that I was just faking it. By the time I was 21 and in the Army, someone finally started believing me and I was diagnosed with fibromyalgia. For the first decade, I still got a lot of doctors who still believed I was faking it. I've had to be very careful when choosing specialty doctors because I have gotten burned badly.

      The worst is when my family doctor forgets and does something which results in me being in pain for a week during a "simple" checkup. I'm 36 now, but look younger, and as you obviously know, I look perfectly healthy. I am in college now, and it is incredibly difficult being around young people who all think I am perfectly fine. It creates awkward moments.

      I am thankful that your daughter at least has you to believe her. My mom eventually gave up by the time I was a teenager after doctors continued to say there was nothing wrong with me. And I hope that you are able to have time for yourself to unwind. I have been married for over a decade, and I know that my condition takes a major toll on my husband. It is very difficult to watch someone you love be in so much pain and not be able to do much about it.

      Time is of no account with great thoughts, which are as fresh to-day as when they first passed through their authors' minds ages ago. - Samuel Smiles

      by moviemeister76 on Wed Jan 30, 2013 at 01:33:33 PM PST

      [ Parent ]

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