How Minimizing My Symptoms Delayed My AS Diagnosis

Columnist Janneke Phung recognizes the importance of advocating for herself

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by Janneke Phung |

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“Hey, did you know that redheads feel pain differently?” I asked my husband after stumbling upon some research earlier in the day. As a redhead who’s often experienced all sorts of pain, I wondered if my redheadedness was to blame for my constant ailments.

My ankylosing spondylitis (AS) symptoms started in my late teenage years. I’d been in a car accident, which I figured had triggered my endless headaches. I chewed gum one afternoon, which explained why I had agonizing temporomandibular joint issues for months, right? I was clearly foolish to think I could go for a jog around a little pond while I was so out of shape — my joints felt like they were on fire for weeks afterward! I thought it a little odd that vacuuming caused terrible pain to shoot down my leg, but I didn’t mind handing that chore over to my husband. I figured that poor posture while nursing and constantly carrying a toddler on my hips must be the cause of the debilitating back pain I experienced at 3 a.m. every night. Maybe a new mattress would help?

The doctors weren’t worried and prescribed muscle relaxants. I shrugged as I swallowed them down. “I must have a low pain threshold!” I thought. I tried three different mattresses in one year; it certainly wasn’t the mattress. Maybe it was the red hair!

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There was some truth to what I believed caused my pain in each of the above scenarios. But the degree of pain caused by those relatively normal activities was abnormal. In hindsight, it wasn’t the red hair, and the pain wasn’t insignificant. Even though numerous doctors suggested the pain was in my head, it wasn’t. The pain was real and a sign of something seriously wrong.

This cycle of minimizing my pain, both by myself and by doctors, went on for over a decade. In hindsight, I wonder how things might’ve turned out differently if I’d paid more attention to my mysterious and debilitating symptoms. What if I’d insisted on further tests and imaging when I knew something was off? The saying that hindsight is 20/20 is true!

An earlier diagnosis of AS is critical, as treatment is most successful before the disease causes irreversible damage. However, I felt like my condition wasn’t taken seriously until it got very bad. At age 35, I finally got a diagnosis of ankylosing spondylitis.

Having a name for the incurable illness causing my pain brought me so much relief. I felt validated when I learned my pain wasn’t in my head. Once diagnosed, I also realized that I needed to become my own best health advocate.

A diagnosis was critical for me to have a starting point for treatment. I don’t blame well-intentioned doctors for not getting me an earlier diagnosis — they couldn’t feel my pain. I’ve learned that when symptoms spiral out of control, it’s best if I don’t sit idly by waiting for doctors to tell me what textbooks say is wrong (or not wrong) with my body.

It was only when I started taking responsibility for my health that I finally believed there was hope.

Thanks for reading! You can read more about my story, browse starch-free recipes, or read about the success stories of others who successfully manage their AS with diet and lifestyle modifications here. Join me on Instagram and Facebook for the latest updates and recipes!

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.


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