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In preparation for Crohn’s and Colitis Awareness Week, I reached out to several ladies involved in Girls with Guts to ask if they would be willing to share their stories. The resulting few weeks of correspondence, in a rather inspired accident, ended up painting a remarkably accurate picture of life with IBD.

Simply put, our lives are messy. Life with a chronic illness often takes away a good deal of our autonomy; as a result, we try to retain control in any way we can. We develop coping mechanisms to try to plan for the future as best we can. Yes, the enormity of illness and its looming uncertainty are always going to be there. Fine, I’ll alter my plans to be realistic with my capabilities and limitations. But you, IBD, you stay in this box right here that I’ve planned for. You’ve already taken enough from me.

I ended up asking ten women to consider writing this week. Over the course of about three weeks, three were hospitalized. One had major surgery. Two more recognized that their current emotional state was to raw to openly share about their disease. My rapid devolvement of my neat and clean little plan of collecting seven stories for this week was reminding me of that which I had learned so many times before.

This, friends, is life with IBD. Our bodies rebel. Returning symptoms and surgical complications arise, unplanned and unchecked, from what may have been a beautiful remission. The emotional toll of living in painful and unreliable bodies tests us each and every time. Panic starts to rise with even the slightest increase in symptoms. This is the fear that we rarely share with the outside world.

On this last day of Crohn’s and Colitis Awareness Week 2017, remember the silent sister. She is the woman who sometimes hides her symptoms from her loved ones, and wants to minimize the impact of her illness on them. She is the woman who grits her teeth and takes deep breaths during endless, painful tests and procedures. She is the woman who never breaks her calm demeanor when the doctor presents more bad news. She has perfected building from her brokenness and silent tears as she struggles to accept her new reality.

We all know her; we’ve seen her in ourselves and feared for her among our sisters. The silent sister desperately holds herself together with the last fragile threads of determination. She does not demand action from others, but can draw from their unassuming love. She can fade into the shadows while the world continues to turn.

Campaigns for IBD awareness give us the opportunity to catch the silent sister in a net of acceptance and understanding. We can remind the world of the struggles behind her confident social media posts as a mighty warrior. We can speak for her when she cannot. It’s time to carry her torch until once again, she finds her voice.

 

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Giving in and getting up: my decision to have j-pouch surgery Angela – Inside the Inside

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  1. Ronda Smith says:

    So beautifully written!

  2. Deb says:

    So very proud of you!

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