I realize that the title of this column is hyperbolic, but it contains an element of truth. I often think about how we get to know our daily pain on a deep, intuitive level. We can guess its patterns and ways of expression. We can understand where it came from or how we coaxed it out of hiding. The pain becomes our constant — the thing we hold closest, a companion with whom we negotiate each night and day.
For most of us with ankylosing spondylitis (AS), the pain is chronic. It might be a two on a scale of one to 10, but it’s always present. However, I’ve had a few reprieves. One time, when I had shingles caused by a weakened immune system linked to my use of biologics, I had barely any pain. It was as if my immune system was so busy battling the shingles that it had no time to fight itself. The lack of pain felt almost like an emptiness, as if I were walking around with my old, pre-AS self. I was covered in horrible red blisters and dealing with nerve pain, but the AS pain had vanished, albeit temporarily.
In those moments, I struggled to remember the dull ache, the floating pain, the random stiffness that comes at night or first thing in the morning. It was a long, lost friend whose face had become blurred in my memory. And I liked that facelessness.
But sure enough, the pain crept back — my familiar friend. Soon, I was back to bargaining with my body: not too much sitting or moving; not too many delicious (and inflammatory) foods, but enough that I’m happy. Though, I swear to god that I’ll never give up cheese.
My point is that we become used to the pain. For some of us, this is a sad thought; it’s hopeless, unfortunate, tragic.
I think about it as a lesson in getting to know myself. It’s an opportunity to get familiar with my body, listen to its needs, feed it what it wants, and nourish it in its hard times. I know when to pour myself a glass of wine and when to avoid drinking. I learn when to draw a nice Epsom salt bath. I recognize when I need sleep and when to stretch, when to be kinder to myself, and when I can push a little harder.
It’s not ideal or fair — but it’s the way it is. And when we reframe our situation, sometimes it becomes more like a friend than an enemy.
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 Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.
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