Some Rheumatologists Don’t Understand How Much It Hurts

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Some rheumatologists say they don’t believe their patients

Jenna shopping with JRAIt is one thing to act like women are catastrophizing when they claim that Rheumatoid Arthritis hurts so much. But it’s another thing when it is done to children. Unfortunately, I’m familiar with being disbelieved by doctors. But I’m still shocked that they do that to children.

Over the last year, several parents have told me such stories. They tell me that they cannot convince their rheumatologists that the kids are actually in pain. Sometimes the parents are told that their kids are just lazy. Or depressed. Or trying to get attention.  These are kids who have already been diagnosed and treated for Juvenile Arthritis / JRA / JIA. And the symptoms that they complain of are typical JRA symptoms. Yet, their complaints of pain and weakness are disbelieved.

This happened to one family yesterday. Here is what Amy, the little patient’s mom said on Twitter after their appointment:  “SO, the #rheum says her #juvenilearthritis is fine. Pain is in her head & or faking/making it up. Yup!”

I’ve talked a little bit with Amy. There’s more to their story. There are pictures of precious swollen knees and nodules on tiny fingers. This family moved to another state to get better rheumatological care for their little girl. You may have read that there is a rheumatologist shortage; that is more than just a statistic when you can’t find a good doctor.

We can help rheumatologists get a better picture

Yesterday, I made this comment on Facebook: “I keep hearing the same thing from parents I hear from adults: ‘Our doctor said my dear child’s pain is in her head.’ These rheum docs need to hear from patients while they are being trained! Here’s to a fierce 2011. May such statements become so much rocket fuel for change.” You can read the thirty-some-odd comments here.

It’s not acceptable to do this to children. Or women. Or men either. I have to believe that as we speak up together about what RA is really like, we can and will make a difference.

One goal I have this year is for more rheumatologists to read the RA onset story pages. There are over sixty stories there now. It is a picture of reality that cannot be denied.

Here’s a link to Amy’s blog about their Juvenile Arthritis journey. Maybe reading that would help doctors, too.

Recommended reading:

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Kelly Young. All rights reserved.

This entry was posted on Tuesday, January 4th, 2011 at 6:00 am and is filed under Don't miss this!, RA Education. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

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