Spin Your Story : Incurable Hope


Guest post by Joslyn Neiderer of Ramble On.


, originally uploaded by weepy hollow.

Incurable Hope

Shortly after my 28th birthday I was diagnosed with an inflammatory bowel disease (IBD), specifically, Crohn’s. My doctor handed me a bunch of paper work on it, which I shoved into my bag and made a poor joke about reading it while I was in the bathroom. She laughed. I didn’t. I knew I was sick for years, at least five, and was in denial and now that it was finally happening I was conflicted. I was relieved to find out what was wrong me but terrified because I really had no idea what it was.

When I got home and went through the papers three phrases stuck out to me: chronic, life-long, and incurable. This is what I had. It was numbing. I cried. I made the mistake of googling my condition and read a lot of stories from people who were really sick, it made me feel like there was no hope for me that I should just go to bed and wait for things to get worse. Days went by and I was living in a fog. I got up, did what I had to do to take care of my kids, but I wasn’t really there in the sense that I should have been. I was going through the motions then one day it just hit me: I was wasting my life feeling sorry for myself and worrying about what was going to happen to me in the future. The diagnosis was taking over my life despite the fact that the dietary changes I made and the medication I was taking were working to bring me into remission. I was obsessing about what might happen to me while life was going on around me. My kids needed me to be there, not just a shade of their mother. I kept waiting for someone to tell me that I was going to be okay when I realized that I was the one that had to decide that and make the choice that I was going to deal with whatever was happening to me with some sense of grace. I couldn’t just give up. I was not going to let this diagnosis take me.

I was getting better, and now, months later I don’t think about Crohn’s all the time. There are days when I don’t think about it at all. My energy level is very good, I’m spending time with my children, and I’m rediscovering my passions. I’m writing, I’m reading, I’m baking and making up recipes that comply to the diet that I’m on to maintain my remission. I’m trying to reach out and help others cope with this disease. In a sense, I feel that this diagnosis has given me a purpose in my life that I spent years trying to figure out.

I still have days when I’m sad and feeling sorry for myself. Sometimes it sneaks up on me like a cold chill, I can feel every hair on my body standing up and I cry because I am scared and I know now that there is no shame in that. This is a part of me, and until there is a cure, this is something I’m going to have to deal with. I have Crohn’s, Crohn’s does not have me.

Joslyn Neiderer is a mama of three living on top of a mountain. Find her baking grain free & knitting at Ramble On.

(Spin Your Story is a brand spankin’ new feature here on KOM, if you’d like to spin your story, get the specs here, I’d love to have you!)



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