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Rheumatoid Arthritis Awareness: Sugar Coat Cookies Please, Not a Disease

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Why the sugar coating of Rheumatoid Arthritis in the media?

sugar coated cookiesDo you remember the insistence of Woman’s Day editors that patients were wrong and their article on Rheumatoid Arthritis was correct? The author later recanted, but the editor dug in repeatedly. That was three years ago and my first taste of the dogged commitment in the media to misconstrue this disease. If you’re new to the site, click here to see some our examples of the media’s treatment of RA.

When I spoke to a rheumatology nurses conference recently, this problem is one of the things that truly stunned them. Nurses asked me: Why do RA patients have to endure this misinformation? Indeed, patients frequently ask the same question: WHY?

The glossy, sugar-coated Woman’s-Day-RA is ubiquitous

I’ve even received letters from patients in other countries where patients say there is a concerted effort from various organizations to keep all media stories about RA “positive.” Pasting in the words of one patient, they are “woefully misleading… playing down the effects of the disease” and telling anyone interviewed “what they should be like.” Personally, I have also been told before a keynote speech that I must present the disease in a positive light. Instead, I guaranteed that the patients would “be encouraged and empowered” by my talk, and they definitely said they were.

While RA Warrior and the Rheumatoid Patient Foundation have achieved tremendous traction in a few short years, that has been because our work has resonated so clearly with patients! Patients are grateful to see their own issues and experiences discussed reasonably instead of sugar coated or ignored. To help people living with Rheumatoid Disease, we do and must tell it like it is, even if that makes someone else with a different agenda uncomfortable.

As a Rheumatoid Disease patient or caregiver, what do you think?

I’d love to hear your ideas about why sugar coating RA remains the norm. Last year, I wrote about some reasons the public perception of RA is so “rosy.” That’s a definite piece to the puzzle. But, why the insistence on minimizing statistics, glossing over new scientific knowledge about the systemic nature of the disease, and reframing extra-articular disease as co-morbidity? Patient testimony has been discounted for centuries with RA, but why ignore reputable studies that confirm patients’ experience?

If we can recognize the motives for this effort, that will help us unravel it.

Victory for patients with Women magazine

Last week after I blogged about how patients and others had been disappointed with the images chosen after my recent interview for a story about Rheumatoid Arthritis in Women magazine, I had a very productive discussion with the editor. I’m not sure whether they read the many comments here and on social media, but they definitely got the message that patients did not feel accurately represented by those models, however lovely. The great news is that Women magazine is committed to communicating with us in the future to be sure that Rheumatoid Disease is characterized accurately. They see value in becoming a trusted source of information, which is how the media is supposed to work, right?

Postblog: Patients are by no means alone. There are dozens of articles here on RA Warrior about the great work of doctors and other investigators who recognize the seriousness of Rheumatoid Disease and who’ve spent their careers dedicated to our cause. We’ve been especially appreciative of the work of Ted Pincus and his colleagues, Mayo Clinic’s Sherine Gabriel and John Davis, research funded by the ACR’s REF, and the words of Dr. Steve Paget which in many cases echo what patients know firsthand.

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Kelly Young. All rights reserved.

This entry was posted on Wednesday, August 15th, 2012 at 10:40 am and is filed under Don't miss this!. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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