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When I Dropped the Word 'Cure' From My Vocabulary

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When I was diagnosed with interstitial cystitis or painful bladder disorder, I had just completed several years of intensive study that had changed my life and perspective. These studies had taken me around the world and I was shown so much potential for healing and growth. This mindset lead me into a bit of a trap, an illusion that I could “beat” my disease, that it was something to be “conquered.” That in time I would be back to eating spicy food, drinking green tea, teaching, working, running and that the pain would fade from my mind. Notice I defined “cure” as going back to how I was living before, and that was the trap.

I kept setting up ridiculous timelines for when I would feel better, when I would be able to be happy again. I believed my success was dependent on how quickly I cured my disease and moved on with my life. I was committed to following the program provided by my physical therapist, the diet guidelines provided by my doctor and learning how to just get past this. I experienced and learned what people in pain are willing to do to find relief and how comprised thinking and understanding can be about different tests or procedures.

For example, I underwent a nerve test to see if an implant would help with the pain or frequency of urination. The test was extremely painful for me and in the end resulted in stopping the test prematurely with my doctor’s instructions and my husband having to remove the leads at home. Despite all of those facts, when I was following up in the doctor’s office and she wanted to explore the next phase of the test, believing the increased pain was because the leads migrated off the nerve, I found myself nodding along. It was tempting to schedule a procedure in the operating room to allow better instrumentation and better placement of the leads because it might have resulted in relief. I remember telling her I would call the nurse in the afternoon to schedule the procedure. It was only when I called my husband and he started asking for more information that I realized how compromised my decision making skills were. I didn’t ask my doctor any clarifying questions, or bring up any concerns. I was desperate for a “cure.”

Slowly I have dropped that word from my vocabulary, focusing instead on words like healthy, full, passionate and peaceful to work towards. These words have a much broader definition and allow me some space to make decisions and consider the consequences. Focusing on those words help me avoid the desperation of searching for a cure.

For me, the trap of searching for a cure causes me to ignore the good things that have happened as a result of my illness. It affects how I view my worth and honestly affects my health by adding to my stress. This is not a disease to “beat,” it is a part of me and I will do my best to live with it and create the best life possible. It doesn’t matter if my bladder hurts or not; I am still able to laugh, communicate and find news ways to enjoy life.

Originally published: October 7, 2016
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