November 24, 2020

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What Finally Made a Difference in My Chronic Illness Treatment

5 min read
While standing before the bathroom mirror of my hospital room, I cautiously ran my fingers...

While standing before the bathroom mirror of my hospital room, I cautiously ran my fingers over the steri-strips that held together a fresh, two-inch incision above my belly button. They seemed too small to properly do the job of holding everything in when it felt like I would burst open at any moment. How could something so small leave my entire body feeling wretched? My bloated belly donned scars from months of failed surgical interventions. This one very final and permanent one, front and center, removed the parts of me deemed forever unfixable. Damaged. Diseased. Broken.

Ileocecectomy and small bowel resection were not terms in my vocabulary just one month prior. Being shuffled off to a university surgeon by my gastroenterologist was one of the scariest moments of my life. Fraught with a deep sense of defeat, I surrendered my body over to a stranger and his capable hands, hoping he could eradicate the hidden damage incurred by my own flesh.

Related:​ 5 Songs That Were (Maybe) Inspired by Inflammatory Bowel Disease

I never expected betrayal would have weaved it’s way into my life in the form of autoimmunity.

The bandages on my belly and bruises up and down my arms were merely the physical aftermath of an invisible illness ravaging my insides for months. Crohn’s disease had become an ugly reality in my twenties, and its effects felt utterly devastating.

My own body did this to me?

The body I cared for. The body I exercised and fed well. The body that had borne and nourished three healthy children. The body that loved and served others. The body that was far from perfect, but still valued. The body that was “fearfully and wonderfully made.” What a joke that felt like. At some point it turned against me. It did me wrong and attacked itself, leaving me incredibly unwell for too long. I hadn’t experienced betrayal before, but this sure felt like it.

Related:​ Why These 4 Assumptions About Inflammatory Bowel Disease Are Wrong

In the months following the surgery I became increasingly anxious. Everyone around me applauded my recovery as a success, simultaneously implying I was “fixed.”

Do they not realize that you cannot “fix” autoimmune disease?

My gastroenterologist knew this. In fact, she offered the only solution any other gastroenterologist before her ever offered: biologics. Heavy duty immune modulating and immune suppressing medications. For life.

I felt stuck between a rock and a hard place: take the injections and risk the side effects of living with a compromised immune system, or don’t take the injections and eventually need more surgery. This was the best solution extended to me by the medical community, and it was one I wanted no part of.

Fast forward 10 months to a rainy weeknight in April. I found myself sitting in the office of a doctor I had just met, with tears brimming in my eyes as he offered a solution I had unrelentingly believed was possible, despite little evidence of it. This was my last ditch effort. Having healed from the surgery, I was keenly aware of the small pains and discomforts beginning to develop, indicators that something was amiss.

Related:​ How Step Therapy Hurts Chronic Illness Patients

After the years I spent living with this invisible illness that nearly tried to steal my identity, security and peace, the hope extended to me at this appointment felt overwhelming. Finally, the “out” I was desperate for, from between the rock and the hard place, presented itself to me in the form of a kind and understanding man who had led others down the road to remission. This hope gave me the courage I needed to figuratively take the hand of Jesus, step out of the boat of fear and actually stand upon the tumultuous waves of suffering that threatened to drag me down.

I’m still standing upon those waves. In fact, they’re no longer threatening. I learned that the body I once believed to be broken and dysfunctional, actually never was. The debilitating manifestation of my illness was not a sign of betrayal by my own flesh, but a blaring S.O.S that my body was striving to keep me alive.

Viewing Crohn’s disease through the lens of functional medicine, versus allopathic medicine, taught me that my immune system was not something that needed to be squelched and silenced. Disconnecting a fire alarm from its power source to silence the beeping doesn’t negate the fact that a fire is still raging somewhere in the house. I learned that my immune system was signaling to me that I needed to find the fire and extinguish it. With the help of my doctor and support from my family, we found the fires and put them out.

My journey to wholeness didn’t happen with an instantaneous miracle, yet I count it a miracle nonetheless. “Fearfully and wonderfully made.” I actually believe that today. Verses that once taunted me when I blamed my own flesh, now set the precedent for the way I care for myself and my family. Our bodies are not something we must strong-arm and beat into submission with diets, pills, exercise and life-altering treatments. Not to negate the fact that there may be times we do need the medication or surgery, and we should regularly nourish ourselves with healthy food and exercise. It just shouldn’t be a battle where we attack our symptoms as the enemy. It should be a dance where we partner with bodies — sometimes leading, sometimes following.

When we intentionally participate with the careful design our creator weaved into the very fabric our our being, body, mind and spirit, we partake in His will for us to have dominion over the Earth. Caring for our own flesh, as temporary as it is, is a spiritual work that extends beyond us “prospering and being in health” (3 John 1:2), to actually engaging in the ministry of Jesus when He walked upon this Earth healing and restoring the sick and broken. In the midst of our toughest, most debilitating struggles, do we have the faith to believe that He in fact did “take up our infirmities and bear our disease” (Mat. 8:17)? He doesn’t promise an overnight fix, but can we trust His goodness in His design when He knit us together in our mother’s wombs? (Psalm 139:13)

I examine my scar often — now healed well, no longer raw and pink. I don’t believe it’s by accident, but it bears the shape of a cross. I do not despise it. It represents the lies I believed about my body that the enemy intended for harm, now purged by truth and covered by His love and grace. Wholeness is my portion, and it’s yours too.

Read more stories like this on The Mighty:

What It Means to Be a Millennial With a Chronic Illness

‘Running Breathless’: The Film I Made to Represent My Life With Chronic Illness

10 Things to Include in a Care Package for a Sick Loved One

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