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Flare, Recover, Prepare, Flare: Life with Crohn's Disease

I recently wrote about my Crohn’s disease and the way the seasonal changes affect me. While I was describing the pattern of my disease, I used a phrase that made me stop and think about the cycle of life as I had come to know it:

Flare

Recover

Prepare

Flare

Yes, life with any chronic illness is more complex than this, but at its base, in some derivative, isn’t this how we’re all managing? Isn’t this pattern one we’re all intimately familiar with?

The cycle of flares and recovery with Crohn's

I sit here wondering if that’s a sobering thought or a comforting one if the predictability of an inevitable cycle or the frustration that no matter where I go or what I do, Crohn’s disease is in the back of my mind weighs heavier upon my heart. And I realize, it’s mine to make a choice.

I know that Crohn’s disease will never not be a part of my story, and therefore, this cycle will exist in the background of my life for eternity.

In choosing to be comforted by the predictability, by the knowledge that at some point (no matter how long or ugly or painful it is), a flare will end, I am remembering that the sun will come back out. That I will get back on my feet, back to my baseline, and I will have time and space to catch my breath again.

Have you thought about this before?

Both a flare and recovery won't last forever

I realize for me, the timing between cycle stages may vary drastically some go-arounds, but the phases, they always exist in silos and in entirety. I always have to recover before I can move forward. Once I’m stable, I always have to prepare for the next time. When I flare, I have to remember it won’t last forever.

Acknowledging this pattern makes me think about hope, and where there is space for hope in having a life outside of Crohn’s disease. What I realized is that as with most chronic illnesses, hope should always live in the background, independent of which phase of the cycle you’re experiencing at the present time.

While the flare (and possibly recovery) stages will be significantly more demanding than the preparation period, we can always hope they are shorter in time.

The cycle of flares and recovery still exists in remission

I’m so lucky, and grateful, that I’ve been in remission for the last 18 months. In my mind, however, the cycle still exists. This “prepare” stage is just the longest one I’ve been lucky enough to have.

During it, I conceived a baby, carried that baby for 9 months, delivered her, and successfully breastfed her. At each point along the way, I had a contingency plan in the back of my mind (and in conversations with my partner) incase the flare arrived. How we would handle it. How we would set up for recovery afterward.

My daughter is now six months old, and this chapter of our life continues to change and evolve daily, but my flare plan, it has stayed the same. My hospital bag, it has stayed packed. My emergency contacts, they’ve stayed in the loop. Just in case.

If you’re in the space between your last recovery and your next flare, I’d love to hear how you prepare while also not letting it take over your life. If you’re focusing on hope, what has made it easier to remember that your life will return, even if it looks or feels different to you than the last time?

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