How my life has changed since my ankylosing spondylitis diagnosis

When I was in my mid-to-late teens, I started noticing that pain was a regular part of my life. I have memories of a shoebox full of prescription medication beside my bed — some to treat the various pains I was experiencing and others to manage the side effects.

The drugs were usually helpful in taking care of the painful symptoms I was experiencing until more mysterious aches appeared: sore wrists, an achy jaw, painful lower back and shoulders, headaches, tender ribs. The list of my ailments was long and ever-growing.

Shortly after getting married in 2009, I recognized that my condition was at times debilitating. Vacuuming and mopping, for example, caused significant flaring in my sacroiliac joints, so my husband kindly added those chores to his regular task list.

Then, carrying full cans of paint threw my back out for weeks. Note to self: No more carrying objects heavier than a watermelon. As the years passed, the list of things I could no longer do became as ever-growing as my list of ailments. I was at peace with being unable to vacuum and mop. I was OK with not carrying heavy groceries from my vehicle to the pantry. However, I was horrified when I found myself unable to pick up my wailing infant son from his crib in the middle of the night. This experience lit a fire under me to seek answers once and for all.

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January 23, 2024 Columns by Jemma Newman

Why my goals have changed since my ankylosing spondylitis diagnosis

In October 2019, after much advocating for myself and much waiting for diagnostic imaging in a slow, public healthcare system, I was finally diagnosed with ankylosing spondylitis (AS). The thought that the symptoms I had experienced for over a decade culminated in a disease with a name I couldn’t pronounce was mind-blowing to me.

Despite the relief I felt to finally have a diagnosis, I also needed to grieve the fact that I officially was no longer considered healthy. The thought of living with, as it was presented to me, a lifelong, incurable, debilitating, progressive, and painful disease made life feel long. What I thought had been some achy muscles in my back was, in fact, my body turning against me. The realization of a broken body validated grieving.

A starting point

While grieving was good, getting stuck in a low state for some time was not helpful. In time, I realized I wanted to do all I could to be the best wife and mom possible despite my diagnosis. As much as it depended on me, I was determined to turn a lemon into lemonade.

One key benefit of finally having a diagnosis was having a starting point for treatment. As I waited (for months) for mainstream treatment, I decided to try alternative therapies. Most drastically, I did a strict starch-free autoimmune elimination diet. Little did I know at the time that this decisive and determined step toward treating AS would be life-changing. Being my own health advocate has been exhausting and overwhelming, but it’s paid off hugely.

Today, I live a life that is relatively pain-free (and medication-free!). Lifestyle modifications with a heavy focus on eating the right foods for my body have me feeling better now than I have for decades. I can wholeheartedly say that a diagnosis of AS has become a blessing in my life. I can’t describe how grateful I am to be able to vacuum and mop my floors again after a 10-year hiatus.

Thanks for reading! You can learn more about my story, browse starch-free recipes, or peruse the stories of others who successfully manage their AS with diet and lifestyle modifications on my website. 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.