Busting Axial Spondyloarthritis Myths: Part 1
As a community moderator for Health Union (and as an AxSpA patient myself), I read dozens of posts from people living with axial spondyloarthritis (AxSpA) or ankylosing spondylitis (AS) every day in forums on Facebook or in comments on Instagram.
It hurts my soul to read some of the questions (and their responses) — which, at best, come from lack of knowledge ("you can't have AxSpA if you don't test positive for HLA-B27"), and at worst come from neglect of information and fact (like men get it worse). So, let me break these myths down; you can keep this handy or can send it to anyone who has further questions.
Myth: AxSpA and AS are a man's disease. WRONG.
Fact: You know how most medical research has been done by and on white men? Yeah. The literature just hasn't caught up to reality yet — because while men do get diagnosed with AS, women are also afflicted by AS and also tend to have lower life quality due to it. When it comes to AxSpA, there is no clear information on gender breakdown, although women do tend to be diagnosed later on, as women's pain tends to be reduced or written off.
Myth: Only old people can get AxSpA or AS because it's arthritis, right? WRONG.
Fact: So, arthritis isn't one thing. It's very common (and it's also the leading cause of disability), but it's an umbrella term for overall joint pain and disease. In fact, there are more than 100 types of arthritis. Some types? Lupus, psoriatic arthritis, fibromyalgia, Ehlers Danlos syndrome, and so many more.
AxSpA/AS are under that big umbrella of arthritis. And while many older people have AxSpA (since, you know, it's incurable), many other older people also have other types of arthritis (osteoarthritis is a common one). Arthritis affects people of every age (yep, including kids!) and affects more women than men. In short, it's reductive and incorrect to say only old people have arthritis.
Also worth noting: AxSpA is an inflammatory, systemic disease — which means it affects other body parts and organs. On the other hand, osteoarthritis, which often occurs in middle age, is not exactly considered inflammatory and does not affect organs. Oh, and guess what? People are commonly diagnosed with AxSpA between the age of 20-30. So, yeah, it affects everyone.
Myth: AxSpA and AS are "just" back pain. WRONG.
Fact: Back pain is a form of arthritis, but as stated above, AxSpA is an inflammatory, systemic disease, and it affects other body parts and organs. It can affect the gut, the eyes, the skin, the heart, the joints, and so much more.
Also, no pain should be reduced to "just back pain" or "just knee pain." Pain is not okay, and it's not fair to reduce it.
Myth: You can cure it. WRONG.
Fact: AxSpA is incurable, although periods of remission totally happen — and you absolutely can manage AxSpA with medication and lifestyle changes. You are not doomed. For example, some people find they can manage their disease with movement, dietary changes, and anti-inflammatory medications like Ibuprofen. Others, however, require medications like Biologics, assistive devices, and more serious interventions. There is a whole spectrum of disability when it comes to AxSpA, and unfortunately, the disease isn't exactly predictable.
Can you tell when a flare is coming?