February 3rd, 2020
Just diagnosed with Ankylosing Spondylitis? What does the diagnosis mean for your body and overall health? Or maybe you’ve been battling Ankylosing Spondylitis for years when new symptoms arise? Are these symptoms from your AS or something else?
Acquiring some working knowledge of your disease helps reduce the uncertainty of your diagnosis, understand and recognize your symptoms, and help you make educated decisions about treatment and everyday activities. But where do you find the information you need? Do you rely solely on your doctor and base your own understanding on the disclosures of another person? Or do you research online and sift through a wide range of articles with differing levels of credibility and no be-all end-all source of information?
Here are some things to consider, and some things to watch out for, when researching your disease.
Your Rheumatologist
Of course, your rheumatologist is who you discuss new or worsening symptoms along with your treatment plan. Rheumatologists are the experts, and they are the ones who see patients like you day in and day out. When you visit your doctor, go with your most concerns, but also with questions that will help you understand the nature of your disease.
As knowledgeable and welcoming as she may be, I don’t recommend relying solely on your rheumatologist for everything you know about AS. I have seen four different rheumatologists and at least as many PAs over the past several years and, truth be told, some are great in the information-imparting game, while others are more concerned with blood work and radiographic results (which is especially problematic for women, but more on that below).
With that said, I don’t discount in any way the value of the rheumatologist as a source of information. But I do firmly believe that you are your best advocate. To be a good advocate you need to know your stuff!
Catch-all Medical Websites
So where else do you go? Today, our first instinct is to turn to Google. There’s a wealth of information online, which makes it especially vital to evaluate the information you’re finding, and who’s providing it.
According to Forbes, the first five results of a Google search receive 67.6% of total website clicks, and second-page results only receive 6% of the overall clicks. While there’s some good information about Ankylosing Spondylitis online, that information doesn’t usually appear at the top of the search results, especially if your search is broad.
For example, I just performed a quick Google search for “Ankylosing Spondylitis,” and these websites pop up first: Mayo Clinic, WebMD, Medical News Today, and Medicine Plus. While these websites are a good starting-point, I wouldn’t advise relying on them for thorough, disease-specific information, and I certainly wouldn’t rely on them to research symptoms. It’s sort of like assuming Wikipedia can tell you everything there is to know about the United States Constitution. Like Wikipedia, WebMD-like websites do not specialize in rheumatic diseases and therefore cannot provide specialized knowledge about specific disease states.
University, Foundation, and Association Websites
Here’s where you should be looking for specific and up-to-date information about Ankylosing Spondylitis. University, Foundation, and Association websites are credible sources of detailed information, for the most part. Many, like the Johns Hopkins Arthritis Center, even cite recent articles as their sources of information.
Additionally, these websites have a narrow focus--where Healthline can give you factoids about virtually any disease or symptom, the Spondylitis Association of America’s website will give you in-depth information on symptoms, possible complications, and treatment options specifically for Spondyloarthropathies.
Blogs or Online Communities
To help cope with your disease, there’s no better resource than an active and understanding community. It's often difficult to find people who have heard of AS, never mind people that have AS. That’s where online communities come in. Join a Facebook Group or a website dedicated to sharing stories about managing Ankylosing Spondylitis to connect with people who understand what it’s like living with this disease.
Blogs and online communities are the perfect places to find stories about people like you, suffering through the daily pain and fatigue that only fellow AS sufferers understand, and working hard to make the best of a life with a chronic disease. Blogs can be a source of inspiration, a place to find advice about how to manage particular challenges with AS, or a way to ward off the sense that you’re alone in your struggles.
Arm yourself with quality information, and when you have questions, concerns, or are uncertain about your disease, seek out a compassionate, understanding community.
However, as much as you may rely on these communities for common understanding and advice, always confirm any information about symptoms and treatment plans with another source. I’ve run into individuals who connect every issue they’re experiencing with AS, while others are dissuaded from treatment plans because of the fears or concerns of other group members. Only you and your doctor can determine the best treatment plan for you.
Ankylosing Spondylitis and Women
In my experience, it's not easy to find any sort of definitive answers about Ankylosing Spondylitis and disease activity. This is more true for women, since women are under-represented in studies of the disease and analyses often don’t account for gender differences in the way the disease manifests.
When I sift through credible online resources, I find abundant information on how AS primarily affects the SI joints and the spine, and less information about the extra articular manifestations of AS that are more common in women (such as enthesitis and inflammatory bowel disease). I also find information about radiographic damage, but little that explains how women generally show less radiographic damage even though disease activity and quality of life tend to be worse. Likewise, some women (like myself) tend to experience more peripheral joint involvement, though most websites don’t even mention peripheral joint involvement as a possible complication!
The truth is, women have to work harder and search longer to find information about their disease manifestations. And then sometimes you run into information that ignores this gender skew in research and manifestation, like this statement: “[AS] is less common in women, whose symptoms are often milder and more difficult to diagnose.” In essence, yes--the most frequently indicated symptoms occur more frequently in men, are more severe in men, and therefore easier to diagnose. That does not mean AS symptoms are milder in women. Taking into consideration the extra articular manifestations and peripheral involvement--the symptoms that occur more frequently in women--symptoms in women are anything but mild.
All in all, you are your best advocate. You are also the only one responsible for managing your disease. Arm yourself with quality information, and when you have questions, concerns, or are uncertain about your disease, seek out a compassionate, understanding community.
-Jessica