Jul 20, 2023Living with Crohn’s Disease as a Disability

Living with Crohn’s Disease as a Disability

Kristi Seaton Five-minute read.   Resources

Kristi Seaton, a Vestry member of St. Mary’s Episcopal Church in Kansas City, talks about her experience living with Crohn’s disease during Disability Pride Month.

Growing up, I always had ambitious plans for my education and future profession and I loved hanging out with my friends. Whether it was competitive debate or helping found a youth community volunteer organization, I loved competing and embracing life to the fullest. However, my world came crashing down when I was diagnosed with Crohn’s disease on my 18th birthday. I am thankful that I did not fully know what was to come at the tender age of 18.

Crohn’s disease is an incurable chronic inflammatory bowel disease that affects the lining of the digestive tract. It causes severe abdominal pain, diarrhea, fatigue, and weight loss. Living with this condition has been an ongoing battle that has shaped my life in ways I never could have imagined. I had two near-death experiences before the age of 27. My long-time primary care doctor admitted to me on my 40th birthday that he did not expect for me to live to see 30.

One of the most challenging aspects of living with Crohn’s disease is its unpredictable nature. Flare-ups can occur at any time without warning, leaving me exhausted and in pain for days or even weeks on end. This unpredictability made it difficult to maintain a regular job or commit to long-term plans like finishing my education.

I have often felt isolated while navigating long hospital stays and struggled with feelings of inadequacy in my relationships, jobs and ministry. Watching my friends pursue their dreams while I struggled to stay out of the hospital was difficult emotionally and spiritually. It felt as though life was passing me by while I was trapped in a cycle of surgeries, complications and weeks-long hospital admissions.

There have been practical difficulties that have changed my life. I am always conscious of the accommodations required to navigate relatively ordinary tasks. I have favorite grocery stores because I know where their bathrooms are located. I have specific gas stations that I use because they have clean and safe bathrooms in the event of an emergency. Road trips and
flying on airplanes are carefully calculated. I am hyper-aware careful about when and what I eat knowing I might not have easy access to bathroom accommodations. Vacations are complicated when I am away from my routine of medications and IV fluids. I have to pack medication, ostomy supplies and IV hydration supplies in large heavy suitcases. I sometimes sit in meetings, class, movie theatres, and work shifts with poles and backpacks that hold pumps pushing intravenous antibiotics, nutrition and hydration. My wardrobe is carefully curated to accommodate my ostomy bag and my ever-changing body. I intentionally choose seating at restaurants, theatres and church that allows me to escape to a bathroom for those times when my gut doesn’t cooperate or nausea rules my day. I serve at the altar at church and I am aware
of timing my meals and medications that cause nausea so that I don’t interrupt the serving of others.

In preparation for writing this article, I calculated how much time I spend in a month caring for myself while in remission. I spend 28 hours a month taking care of myself with my disability without any complications or routine care factored in. Maintaining my remission is the equivalent of a part-time job.

I have been forced to struggle with the concept of being “enough”. In our secular economy, we are judged, rightly or wrongly, by what we produce. There was a decade-long gap where I was unable to be gainfully employed and I dealt with the shame that I was not “producing” and dependent on several social safety nets during a time of what the government deemed “total and permanent disability”. I had to find a new way of being in the world with my broken and disabled body.

One of my dearest seminary professors broke my heart wide open when he made eye contact across the room and said “Kristi, you are enough. You are enough.” I had never heard those words spoken to me. I had felt measured by what I failed to do my entire life and Crohn’s, by its nature, deepened a wound I had not identified in my soul.

I came to learn through careful prayer and conversation that God’s economy does not depend on what I can or cannot produce. God’s economy does not depend on my ability to be useful in the way that the world would deem me useful. Instead God’s economy involves the dispensing of the Triune God in Christ into His redeemed and regenerated people so that he becomes their “enoughness” – in the words of the Mad Hatter in Alice in Wonderland – our “muchness”. Christ makes us much muchier. Christ makes us enough. We are not saved, or given perfected or disembodied souls in the afterlife for ourselves. No! That is much too small. We become regenerated, transformed, and spiritual so that we might be built up with all the saints into God’s habitation. This is God’s economy and dispensing, this is the source of our true enoughness.

My disability has transformed my relationship with God and others in profound ways. I have lived with Crohn’s over half of my life and my broken body corrupted by disease has value, not because of what I can produce on my good days, but because Christ himself has made me enough, for that I have made peace with my body in this season of life. I look forward to the resurrection, not because I will have a perfected body, but rather a body with scars that made me beautiful to God that will be able to participate fully in the kingdom to come. May it be so.

Kristi attends St. Mary’s Episcopal Church in downtown Kansas City. She lives in the Brookside neighborhood with her husband. She is a graduate of Nazarene Theological Seminary and hopes to become a Deacon and hospital chaplain.

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