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Bursts of Denial: When AS Hits Suddenly

The thing about ankylosing spondylitis, like many immune-mediated diseases, is that no matter how much we've figured out how to manage/control/collaborate with/understand it, it is still a disease with a mind of its own.

We can eat right, move daily, sleep enough, mitigate stress, and take our medication — basically, we can be a perfect patient (which, BTW, is hardly realistic nor actually attainable for many people may reasons) — and still suffer from flare-ups.

A mind of its own

Ultimately, we as conscious beings are sort of the tip of the iceberg, while the disease lives underneath doing what it does. The inflammation has a mind of its own. When we feel out of control, as though the disease is betraying us or whittling away at what sanity we've managed to grasp onto, it can feel overwhelming — emotionally, physically, and psychologically.

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I would say that even the best of us experience a total relapse of denial. Suddenly all the work you've put into managing and accepting this monster becomes a memory. Suddenly you're newly diagnosed and you're confused and you're being told you've got this lifelong, as-of-yet incurable thing. And you'll need medication. Or maybe surgery. Or maybe assistive devices. And you think, "what, me?" Yes, you. 

Sometimes the pain becomes so intolerable

Sometimes the fatigue becomes so all-consuming. Sometimes the lack of mobility destroys experiences and opportunities. And you're left in its wake thinking, "is this really actually truly my life?"

Bad flares that come out of nowhere and debilitate us build us into the archetype of the fallen tower. They crumble and break us. They bring it all down. They demolish the world we've built for ourselves. They shake the foundation of our sanity and our self-identities.

Bad flares ask me to reevaluate, pick the pieces back up, and start again. I have to ask myself:

  • What have I done to manage this before?
  • What can I do to find some acceptance?
  • What is my evidence that this has broken me for good? (Hint: There usually is none; we are warriors)
  • What is my evidence of resilience? (Hint: I know we all have the evidence)
  • What are some healthy ways to grieve?
  • What is in my power to find some light?
  • What is it about this particular flare that has affected me?
  • Is this denial or is this grief?

In the end, it's okay to cycle through grief stages—sometimes over and over again, weeks or months or even years into a diagnosis and life. Sometimes we live in acceptance, AS being our shadowy friend who follows us around. But sometimes we fall into rage and denial, the light inside of dulled and exhausted.

It's okay. I see you. We can be all of it. We can cycle. We can feel it all and hold it all. We can be all the layers and all the phases. We can be leaders, supporters, advocates, and bringers of hope while also miserable, painful, angry sacks of stiff bone.

That's the thing about this disease; it has taught us to fight, to adapt, to live new lives, to be reborn.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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