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.
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My first stop: some RA message boards. I found enough people with symptoms like mine to convince me this was worth investigating.
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Next stop: Health mega sites. The RA described there did not sound like mine. If the doc read these, no wonder he’s frustrated.
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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?
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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.
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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.
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Many RA patients are not provided with information that is crucial to them. They look to social media for that information.
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A large percentage of RA patients are told that they should feel better since their swelling is down or their blood tests results are normal. They go online asking, “Why am I still in so much pain?”
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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.
Kelly Young is the author of the blog Rheumatoid Arthritis Warrior. Her Twitter handle is @rawarrior.
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Great post by @rawarrior – I enjoyed your writing and hope you continue to find good help/info about RA on #hcsm (social media).
@rawarrior @susannahfox …Kelly, First off, great post?!! Your initial frustration is probably an all too common occurrence amongst patients who suffer from disease states *we* do not know much about. There are many diseases which medicine does not understand well and many patients will be dismissed if they do not meet *recommended* strict criterion, or if the disease state is poorly understood. I must say, I am usually impressed by a physician who is willing to say “I don’t know”… BUT, it’s what that physician’s next actions are that matter most. For me, I will usually turn to the computer, start Googling key words and print them out for the patient. I will ask them to research on their end as I do so on mine and schedule a new appointment in a week or two to review our findings. Simply throwing our hands up and saying “sorry I can’t help you” leaves a less driven or less internet savvy patient with no where else to turn — with many questions, persistent symptoms and a very poor assessment of the medical community. WHAT IS AN “E” PATIENT ??? This term has probably been used too often, and this topic will start to gain more attention soon. Are patients who simply google their disease or health questions e-patients? I would say no…. A true “e”-patient goes further… engaging others and utilizing the wealth of 2.0 technologies and platforms that exist to further their learning and understanding and to hopefully guide others who are suffering from a similar disease state. Your efforts in sharing the *information* available and taking a very active role in your own care (as well as the care of others with similar symptoms) are commendable and clearly demonstrates the power of social media and the empowerment associated with being a truly engaged patient — ore-patient :-) Possessing knowledge on a personal level is empowering, but sharing that knowledge, your symptoms and your experiences clearly demonstrates that what happens in a social environment can have an even more powerful multiplier affect. True #hcsm principles and empowerment…. Thanks for a great guest post!!!
Thanks for the great posts and responses! Let’s get the conversation going!RA patients DO climb mountains! We also LOUDLY question doctors who want to prescribe drugs whose side effects are worse than the aforementioned pain. We are also on a quest for healing which is outside of what the standard allopathic western medicine offers us. NO I do NOT want to inject the latest medicine! NO, I do not want to be just another boat payment for doctors! I have had RA for ~19 years and have found little relief from doctors. When I attended an AF meeting some 15 years ago I discovered they are basically funded by Pharma, and have never joined. When they suggested Vioxx I said, I think I will wait and see on that. I also participated in a medical study, so I am aware of how the studies work, and how and why drugs get approval, definitely some deep pocket interest, and the doctors often are invested in the outcome!All of the good information I have gotten is from people who went the medical route (replacement joints etc.) and warned me NOT to! They have all passed along great information on low fat diets, alternative healing modalities, and support in ways the mainstream medical community can not.SEEK out alternatives, talk to PEOPLE. I am amazed at the wonderful people I have met through my healing quest!!
Thanks, Kelly, for your frank wisdom. As someone with a chronic “thing” that rheumy’s and others seem not to understand, I rely on other patients for information and support. In fact, it’s to the point that I don’t even bother with docs, especially those in specialties who seemed to seem to treat me and others like me as a new “market” to “penetrate” or “capture.” Note: This carping of mine does not apply to docs who participate w/patient communities via social media and demonstrate a willingness and ability to work collaboratively with patients.
@sarahlance @meredithgould thanks for the comments re: @Rawarrior ‘s guest post… inspiring to see how an engaged patient can improve their own health and well being… still want to see this evolve to more of a team effort with engaged physicians participating as team member or leader (patient’s choice). Perhaps @myhealthcomm ‘s network will be enable patients to engage their own, or an #hcsm savvy physician in a compliant manner???
@Paul Thanks for reading.
@Howard, so much I would want to say! First, the rheum doc in question had told me, “I don’t ever use computers. Not even email.” However, doc in question could have used older technology and picked up a telephone to make said contact w/ other rheum docs. Never happened. The doubtful, confused look on that doc’s face should have sent me packing much sooner than the 9 months or so it went on. If I had been on soc. media, I would have had the courage to do that. I felt like it was me who was a “problem” patient. Not only was I not alone, my presentation is not even unusual. This has opened Pandora’s box in a real sense. I’ve gotten hundreds of letters & there are 5,000 people in the Facebook group. Just this morning there a lady posted that their family doc says this issue (RA patients have less visible swelling than expected) is the #1 discussed issue at RA conventions he attends. I get these letters every day.There are many things I could clarify, but I aimed to make the post succint. I was not newly diagnosed. At that point in time, I had had symptoms for over 25 yrs & treatment for about 3. My personal story is on one page of my site but I usually don’t even reference it. Here is why: I used myself as an example about a year ago in a discussion & a doc online interjected that it was inappropriate because it was construed as my seeking to have him treat me. Of course, he was over-reacting, but it taught me to leave my own tx out of all discussions online where physicians are particpating. This post here on Posterous was an exception because I thought it would inform the hcsm community about RA & how social media may be what helps us to change the course of history with a disease.Yes, I thought that “e” stood for “empowered,” as opposed to subjugated or complacent. If we are e-Patients and we empower others, that should be e-squared. ;D
@Sarahlance There are many different courses to Rheumatoid diseases. RA is an extremely heterogeneous disease. This is what makes finding a cure so difficult and makes doctors so confused about the best way to diagnose it.Most RA tends to wax and wane. That makes treating it like shooting at a moving target. Most RA is better off being treated, but I can accept that yours is not.RA can be extremely aggressive and cause irreversible damage quickly. I have one friend who is in a wheelchair because RA destroyed her ankles the very first year. She is on treatment hoping to save other joints. I have another friend who was wheelchair bound and now runs her own store because of treatment. I know another lady who lost her voice for 5 years because of untreated RA attacking her cricoarytenoid joints. She can now speak after a few months of treatment. There is evidence that the high mortality rate with RA (due to its destruction of the heart mainly) may be moderated somewhat by aggressive treatment. So, for me, even if I were not disabled by RA, I would probably choose to be treated. I agree that we ought to seek out alternatives and talk to people. More information is always better. We should pursue evidence-based treatment. If you find relief from changing your diet, then that is what you should do.
@MeredithGould That is a sad commentary on rheum docs. I wish I could say differently, but the sentiment is not uncommon.@howard It’s really okay if docs don’t know. As long as they would say so & try to be part of the solution. Where they go wrong is saying a patient who doesn’t fit their conception is “wrong” as I mentioned early on in this blog: http://rawarrior.com/is-there-typical-rheumatoid-arthritis/ That is where science ends because there is no inquisitiveness. Only arrogance. And untreated patients.I agree Meredith about doctors who engage others in discussions. They are seeking to learn because they recognize that they don’t already know everything. And some things they “know” might be even wrong.