May 15, 2020
May is Spondyloarthritis Awareness Month. Spondyloarthritis is a group of chronic inflammatory arthritis conditions that primarily affect the spine and nearby joints, is immune-mediated, and is systemic (could potentially affect all systems of the body). Spondyloarthritis affects nearly 1 in 100 Americans, but so many people have never heard of Spondyloarthritis or Ankylosing Spondylitis. I hadn’t heard of either before my diagnosis!
Ankylosing Spondylitis (AS for short) is one of these conditions. AS had previously been referred to as a “man’s disease,” since historically men were diagnosed more frequently than women. We now know that AS does not present more in one gender than another, though the misnomer still exists, and it’s caused in part by biases in the medical arena (the “inferred or direct implication that women have a lower threshold” for pain, therefore their pain is less serious), differences in the way the disease manifests, and differences in the way pain is experienced.
The results of this myth of the man’s disease are disheartening for women, to say the least. And since AS was historically considered a man’s disease, research focused more heavily on men and reinforced these initial misconceptions. Recently, that’s started to change.
AS is Not a ‘Man’s Disease,’ it Just Manifests Differently
Ankylosing Spondylitis presents differently in each person affected, of course with some major commonalities. This is especially true when considering how the disease affects women and men. Though still fairly new, there is ample research to show some of these major differences in the way men and women experience AS.
Though the research is varied, several studies show that men exhibit more significant radiographic indications, while women “have higher reported disease activity, [and] proportionally greater functional impairment (ability to do certain daily activities).” In fact, this study shows that AS and non-radiographic axial Spondyloarthritis tend to be more severe in women beginning at an early stage, which then leads to the higher levels of disease activity and “functional failure.” These studies demonstrate that x-rays and MRIs only show part of the story, and maybe not a significant part for women.
In recognition of Spondyloarthritis Awareness Month, I think it’s vital to discuss the fallacies we run into when searching for information and the barriers we hit when seeking medical advice.
In addition to higher levels of disease activity, several studies indicate that women experience more “extra-axial manifestations” and more pronounced enthesitis, or inflammation of sites where ligaments and tendons attach to bone. Extra-axial manifestations include joint pain in peripheral joints, such as hands, wrists, feet, and knees, but also includes eye involvement (iritis and uveitis).
How Do My Symptoms Compare?
While diagnosed with AS and not non-radiographic axial spondyloarthritis, the damage shown on my x-rays and MRIs is what I would call mild. Lower back pain was the first AS symptom that I experienced (starting in my late teens), and only recently have I developed the “extra-axial manifestations.” In fact, I can thank (ha!) my hand and knee inflammation for my AS diagnosis, since I spent over a decade complaining to doctors about back pain without ever receiving a referral to a rheumatologist.
Currently, the symptoms that affect me the most on a day to day basis are the “extra-axial manifestations” of AS. In this way, my experience with AS seems to match what studies show are typical for women. The most notable of these extra-axial symptoms are the pain and swelling I experience in my hips and knees, more frequently my left hip and left knee. The hip pain is a deep joint pain that’s felt more along the inner-hip and groin area and not necessarily on the side of my body. When bad, this pain and swelling in my hip limits the joint’s range of motion and makes it painful to walk on.
Additionally, inflammation often flares in the first two knuckles on my right hand, typically after any activity that requires holding and moving a thin object, such as writing with a pen or cutting with a knife. Foot pain is also common for me, though managed with quality shoes, and I experience the occasional bout of uveitis.
Diagnosis in Women
Because AS was historically considered a ‘man’s disease,’ more attention was paid (and still is, in some cases), in research and informational sources, to radiographic indications in the spine and less attention to the peripheral arthritis and other symptoms more common for women.
Many doctors refused to take my pain seriously, most stating that I was too young to have back pain.
Websites such as UW Medicine’s page on Ankylosing Spondylitis still cling to the idea that this is a man’s disease, stating “symptoms of ankylosing spondylitis appear most frequently in young men…[and] is less common in women, whose symptoms are often milder and more difficult to diagnose.” This misinformation is frustrating to see, and contributes to significant delays in diagnosis for women.
I spent over a decade visiting different doctors about my chronic back pain, experiencing what I refer to as a string of doctor dismissals. Many doctors refused to take my pain seriously, most stating that I was too young to have back pain. I suspect part of the issue is the medical field’s general tendency to downplay pain expressed by women, treating it not nearly as seriously as pain expressed by men. In truth, women’s pain is more commonly attributed to stress or anxiety by doctors, and therefore prescribed more sedatives and fewer pain medicines.
I have spoken to women on social media who experienced far longer diagnosis delays than my 10+ years, one in particular who experienced over 30 years of intense, crippling back pain before she received a diagnosis. While lower back pain is a hallmark of AS and spondyloarthritis, extra-axial pain and inflammation are common in women and those symptoms may actually interfere with the diagnosis process, since women with more widespread pain are at least “twice as likely to experience a delay in diagnosis.”
Along with delays in diagnosis, women experience more misdiagnoses than do men. Women are more commonly told by doctors that their pain comes from stress or anxiety, and therefore prescribed more sedatives and fewer pain medicines. In fact, this 2019 study shows that women experience significantly higher misdiagnoses than men, among the most common are fibromyalgia and psychosomatic issues.
Correct the Misconceptions
In recognition of Spondyloarthritis Awareness Month, I think it’s vital to discuss the fallacies we run into when searching for information and the barriers we hit when seeking medical advice. And it’s especially important that we talk about the misconceptions we hear about our illnesses and the misconceptions we hear about women’s pain--from those who may not know better and those who absolutely should know better.
Correction #1: the pain women experience is not any less valid than the pain men feel.
Correction #2: young people, yes even young women, can experience serious back and joint pain that can't (and shouldn't) just be explained away by muscle strains, tightness, or bad posture.
Correction #3: just because AS may present differently in women doesn’t mean women should suffer longer delays to diagnosis.
Correction #4: AS is not a man’s disease!
-Jessica