Why my goals have changed since my ankylosing spondylitis diagnosis

Too much stress can make symptoms worse and cause a flare

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by Jemma Newman |

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My social media feed is bloated with posts by friends and acquaintances bursting to share their big, audacious goals with the world — and it’s making me feel queasy.

Every time I’ve picked up my phone lately to seek a little inspiration or entertainment during a few minutes of downtime, I’ve quickly mashed my thumb on the “off” button. Instead of feeling uplifted and connected, seeing other people spouting waterfalls of achievement leaves me with a faint tang of inadequacy and frustration.

For someone living with chronic disease — my husband and I both have ankylosing spondylitis — goal-setting is a little different than it is for others.

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Early on, my ankylosing spondylitis (AS) symptoms stripped my life of everything but a desperate need to figure out what was wrong with me. I wasn’t setting goals like traveling or exercising more. My focus was on looking after my new baby and surviving each day — and every pain-filled night. My stiff and burning ribs and spine created tunnel vision, with only one thing in mind: to receive a diagnosis and get medical help.

In 2020, I was both horrified after receiving that diagnosis of a progressive, lifelong disease, and grateful that I could now focus my attention on reducing my symptoms. My new laser-focussed goal became to find relief from the acute pain in my thoracic spine that denied me sleep after 2 a.m. every night and kept my back screaming in stiffened agony during daytime activities.

I never even considered setting a big goal like achieving AS remission. My goals were bite-sized. I might even call them nibble-sized.

Getting through the day

My early goals were to track my symptoms in a journal and figure out what caused extra pain. Nibble-sized achievements were things like finding a bra that didn’t exacerbate my rib pain or bending to vacuum and mop our family home in small increments. Some days, my goal was just to survive the day without crying.

One of the difficulties with setting goals while managing a chronic disease is explained by blogger Sara Allen on her website, Managing Chronic. “You are not always in control of your body when you have a chronic condition,” Sara writes. “If you push yourself too hard, you could have a flare or relapse.”

Causing a flare, and then letting someone down, is exactly what I worry about when it comes to planning big, exciting goals these days. Though I am managing my AS really well, I’ve learned over the years that too much stress and pushing my limits make my symptoms worse and can even cause a flare.

Goals are often associated with pushing yourself and getting out of your comfort zone. But I’m finally in my comfort zone, and I love it here! It’s taken several years of carefully managing my energy, spending time planning and preparing an incredibly helpful no-starch diet, exercising or stretching daily, regularly visiting the physical therapy clinic, and many other minute steps to reduce my symptoms almost to the point of nonexistence. I couldn’t be more delighted or grateful every single day.

The journey AS has taken me on has completely recalibrated my view on life and goal-setting. Do I feel slightly envious of people with no limits who can literally climb Mount Everest and share glorious photos of every step? Sure. But my goals are small and personal, yet no less precious.

All I crave now are happy days at home, the ability to move my body, and ways to feed my creative mind. Like an oyster cradling a secret iridescent pearl, I hold my tiny, beautiful goals of daily happiness and contentment close.

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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