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When My Doctor Suggested I Stop Searching for Answers for My Illness


The vast majority of chronic pain patients will tell you their illness has been a journey, one they expect to be on for the remainder of their lives. Interstitial cystitis patients will tell you their diagnosis was a journey, one that either took years or is still ongoing.

The weird thing about sprouting an autoimmune disorder at 16 was that it distorted the boundaries I was developing for myself as a young adult. This should have been a time of discovering how much I could push myself to succeed and what my physical and mental limits were as a living human. I imagined a person who pushed herself and persevered to be academically successful, even exceptional, and could return to ballet or another physical discipline for the love of it. I was going to create and earn stupendous amounts of money.

Now, I don’t know of a feeling that motivates me more more sincerely than the sense that there is more to learn, more to pursue, more treatments to try. I feel like I live in a state of suspended tenacity. Ambitious and desirous of lofty pursuits but condemned to channel all my energy into avoiding pain, planning around pain, coping with pain, and most time-consuming of all, asking why the pain.

I recently had my urogynecologist tell me to stop searching. Initially, I was thrown because we barely even agree on an etiology or diagnosis for my chronic UTIs, burning pelvic pain, and pelvic floor dysfunction. I’d poured so much of my attention into my illness and was insistent that I could throw off its shackles if only I looked in the right places for solutions. She gently reminded me that I’d been dedicating my efforts to what I usually call interstitial cystitis for seven years now.

“We’ve tried everything you can tolerate. Maybe now’s the time to treat it like the pain disorder it is so you can spend time on your actual life?”

Years of thinking my strength was in my inability to accept living like this when it was actually just siphoning off my limited strength reserves sort of unspooled. The incessant, shrieking pain taking a raw metal file to the edges of my neurons, shaving them down bit by bit — maybe it would quiet if only I stopped shrieking along with it.

I feel like an animal that railed against captivity valiantly but eventually bore the yoke because it seemed too inevitable. If it’s a defeat for my ideals, at least it’s a win for coping with this demanding and permanent liege of mine.

I’m certain that if I could go back and redistribute how I spent my efforts from onset to now, I’d prioritize coping well far ahead of seeking ultimately inconsequential answers. It’s not giving up to say “enough.” It’s just addressing the house currently on fire rather than theorizing about the cause.

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Lead photo by Thinkstock Images


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