Busting AxSpA Myths: Part 2

This is part 2 to my Axial Spondyloarthritis Myths, Part 1 post. If you can think of other myths and misunderstandings, I'd love to hear in the comments!

Myth 5: It's your fault you got axial spondyloarthritis or ankylosing spondylitis.

There are a lot of "wellness gurus" out there touting the idea that patients trigger our own diseases with poor food, lack of exercise, or unresolved trauma. While it's clear that our disease intersects with nutrition, gut health, movement, and trauma, genetics are real and you are not to blame for your disease.

No one should be made to feel like they're at fault for their pain. The conversation should be around how we can better support people with chronic conditions, not finger-pointing at hurting patients.

Myth 6: Only white people get axial spondyloarthritis or ankylosing spondylitis.

This is false, and I'm not entirely sure what exacerbated this myth. It certainly could be that historically many health studies are done on and represent white people. People of all ethnic backgrounds have AxSpA. In fact, studies have shown that the disease plays out differently for ethnic groups.

For example, according to Spondylitis.org, "Despite the lower frequency of HLA-B27 and the resulting lower prevalence of AS/AxSpA in the Black population, the results of this study demonstrate higher levels of disease activity, greater functional impairment, and greater radiographic severity in Black AS patients."¹

Myth 7: What works for one person will work for you.

Just like the disease plays out in everyone differently, what one person responds to (meaning medication, diet, or just about anything else) does not and cannot reflect what will work for you or anyone else. I deeply wish it were different — that one medicine or one set diet or one exercise could magically cure all of us — but it just doesn't work that way, especially because there are many factors at play — including genetics, lifestyle, class, race, finances and even where we live (which plays into how much access to support we have).

If you hear someone say keto helped them or meditation or helped them or weightlifting helped them, it may be different for you. And while frustrating (been there), it's important to remember this.

Myth 8: Axial spondyloarthritis or ankylosing spondylitis always causes a hunched back.

AxSpA can cause kyphosis, or a hunched-over posture (I've heard people using the term "hunchback" and it really doesn't sit well with me, but anyway) if it affects the upper part of the neck. This doesn't happen to everyone, although it certainly can happen to some people. The disease plays out differently in everyone.

Myth 9: It's basically just arthritis, right?

First of all, "just arthritis," is pretty terrible on its own — but not, AxSpA is not "just arthritis." That's because it's an inflammatory disease. It's not a wear and tear situation, and it's more than pain.

It can cause psoriasis, bowel problems, and visual problems, like loss of sight, due to uveitis. It can also cause lung issues, which come from scarring and spinal inflammation. Chest expansion can be limited, and breathing can become difficult. Lastly, it can cause aortitis, which is inflammation of the aortic valve and the aorta. There are other complications and comorbities as well.