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How it Feels When Remission Ends

Even though it took a CT to confirm it, I knew in my gut (literally and figuratively) that my time of better health had come to an end earlier this summer. Pain, fatigue, and distressing symptoms had been steadily taking over my days. I’m an overly optimistic person and tried to talk myself out of

the truth for a bit. I managed things privately and reminded myself that there had been other times when things seemed bad for a week or two, but they’d leveled off with rest and some at-home TLC. But lately, unless in public, my diet has become primarily liquid or soft solids because that’s all that my body will tolerate, and medicating symptoms has moved from once or twice a month, to once or twice a week, now once or twice a day.

After 13 years with this disease, I’m quite skilled in “making it work.” But making it work isn’t necessarily a great life goal, and it can get wearing.

I’m exhausted from the life tasks that must continue regardless of my health. Kids’ lunches need to be ma

de, work crises need leadership, laundry needs to be folded and put away. I was born with a drive to put forth exactly the effort that I need to get what I want done. Illness cares not for any of that thinking, though. Crohn’s disease has constantly played tug-of-war with my desire to do what I want and what my body will actually support me to get done. I push myself, hard. But I know better than to push myself too hard.

I spent the last few years of remission reminding myself to live big because I just never could know how long it would last. I’ve taken on a lot -- mothered my two children through a pandemic and back into full-time school (finally!), graduated from grad school and progressed my career, been a caring friend and active member in my community, and continued work on my hobby, an 11-year home reno project with my husband. The funny thing, for me, though, is that it’s never done, because for me, I enjoy putting in the effort every day. I like that about myself, but it can also leave me feeling so low when I just want to keep doing more.

I’ve been here before. But flares, when they are confirmed, still take the wind out of my sails. I am immediately mournful. It’s a bit like a broken heart after a break-up. Why me? Why now? Could I have done something different to change this outcome? It doesn’t matter that I’m a veteran in managing this disease, I’m immediately left with more questions than one visit summary could ever answer. It's still a sad moment, every time.

Each flare also seems to leave a lasting mark on how I will experience life when (fingers crossed) I return to a state of remission once again. Fatigue, joint pain, and the impact of other extraintestinal manifestations always seem to linger and never totally disappear. What will it be this time? Whatever it is I’ll research and try out solutions until I figure out a new trick to manage a new inconvenience. But today i'm sick of solution-ing.

I’m strong. I face discomfort and pain with a mindset that it is temporary. But I am also a feeler. In fact, I consider it to be a super-power in a world that seems, at times, dangerously detached. So I’m proud of myself for feeling sad. (Don’t tell me “Chin up” just yet.) I remind myself that I have a life that I want to live on my terms, so I’m allowed to hurt. I allow myself to honor, at least for today, just how frustrating it can be to live with an incurable illness, one that I never asked for and that will likely never “go away.”

Tomorrow I'll shift my view and make my plan of attack. Just not today.


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