Thanks to Dr. Luks for the invitation to participate. For my first post, I’d like to discuss some surprising things I discovered during of my first year of participation with social media. Sometimes, I pinch myself about how much I’ve learned through social media. That’s figurative of course – RA patients can’t actually pinch anything.
The words I hear the most from RA patients are “Thank heaven I found your site. I no longer feel like I must be crazy.” Why are so many Rheumatoid Arthritis patients using social media to ask, “Am I the only one like this?” It makes sense when I consider what motivated me to build my website to begin with.
Asking Dr. Google about a typical Rheumatoid Arthritis
My rheumatologist said to me four visits in a row, “I’m so puzzled by your case. It doesn’t seem typical any more. I’m not sure what to do. Maybe someone I met at ACR (American College of Rheumatology) would know what to do with you.” It was a little disconcerting since my disease was continually progressing and my treatment was the most aggressive possible. I wondered whether there was any way the internet could help me find an answer. So I made an appointment with Dr. Google.
My first stop: some RA message boards. I found enough people with symptoms like mine to convince me this was worth investigating.
Next stop: Health mega sites. The RA described there did not sound like mine. If the doc read these, no wonder he’s frustrated.
Next: Medical journals, abstracts, and case studies. This was more tedious, but more helpful. I was still surprised at the amount of variance in the description of symptoms and patterns. There were discrepancies between findings themselves and they differed from patients’ descriptions.
After a couple of months of this, I was writing a blog that asked, “Is there a typical RA?” I wasn’t quite sure about an answer, but the contacts I’d had through social media had given me the courage to ask the question. I started writing that the ACR ought to revise its description of RA which docs use as diagnosis guidelines. **
Things I can now say with confidence thanks to social media
For the most part, the patients who use social media are the same people who are seen in clinical settings. They are average people who read the paper, visit with co-workers, and talk on the phone. I’ve even talked with many of them on the phone myself. Facebook, Twitter, blogs, and message boards are just newer ways for exercising that same inquisitive and interactive behavior that most people enjoy.
What have these lovely normal people shown me about how they use social media?
Most RA patients I meet strongly resent the pharma companies’ and the mainstream media’s representations of the disease and see social media as a solution. They feel the disease was misnamed and mostly blame that for the problem with RA awareness. They are using social media to begin a movement to change perceptions about the disease.
There is large percentage of Rheumatoid Arthritis patients whose disease did not read a textbook before it struck them. It seems to be the odd patient whose presentation meets a typical description of RA. There is a wider range of symptom patterns than I’ve seen described anywhere. That discordance drives much traffic in social media about RA.
Many RA patients are not provided with information that is crucial to them. They look to social media for that information.
Lots of RA patients do not appreciate the ways in which the Arthritis Foundation presents RA. Even the AF forum, AF’s attempt to create social media on their own site, has sometimes been a place where RA patients commiserate.
Social media as an entryway
Are there are other patients out there using social media in similar ways? How often does a search for healthcare information become a search for validation and the beginning of a social movement? RA patients are special to me, but I hope all patients are finding the courage to ask whatever questions need to be asked. I’m so glad that social media was the window I could climb through when the doors all seemed closed to me. That’s figurative of course – RA patients don’t climb either.
**Note: The ACR guidelines weren’t created for diagnosis purposes, but that’s how they have been used. Last fall the ACR did revise them, but of course I had nothing to do with it.
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