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The Importance of Having Choices as Someone With Ulcerative Colitis

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My first experience in a hospital was my sophomore year of college. I had managed to go 20 years without a broken bone or serious illness, so when I was assigned to do my music therapy clinical at a children’s hospital I was completely non-empathetic toward the needs of a hospitalized child.

What is Ulcerative Colitis?

My supervisor was very informative. She constantly emphasized the importance of choice, so I listened and always brought multiple colors of every instrument and an array of songs from every genre so the kids could have full control of the music-making experience. These options were supposed to give them some control of their surroundings and their condition. I knew choice was important, but it took losing control of my own body to understand why.

I got diagnosed with ulcerative colitis a couple of months after my hospital practicum ended. I could write a whole book on the way colitis changed my life, but for this essay the important fact is that life as I knew it was taken from me. I was newly 21 and instead of going out for cocktails with my friends, I was taking a cocktail of vitamins and steroids then going to bed early. I went from being an athlete and active member of student organizations to a frequent attendant at the doctor’s office and a two-time colonoscopy champion in the course of one semester. I was robbed of my energy and my only option was to keep listening to my doctor.

During my weekly outpatient hospital stay (iron infusions, ftw), I was trying to study for finals when a volunteer with a cart came to my chair. She asked me what I wanted for lunch and listed for me all the sandwich fillings I could choose from. The variety of choices was exciting and a pleasant change of pace from my usual hospital conversations. As I chose my filling she reached into the cart and then asked one more questions “white bread or whole wheat?” I was overcome with emotion as I held my whole-wheat egg salad sandwich because someone was actually asking me what I wanted to put in my body, down to the type of bread.

After that I understood the value of choice. When you are sick you have no choice in how your body is going to act. You have some choices in treatment options and those become narrower when looking at insurance coverage and risks. But you can choose what color maraca you want to shake with the music therapist, and you can choose your sandwich, and sometimes those seemingly trivial choices are what you need to gain a say on something in your life.

From that point on, I went through my remaining semesters of college making every choice in my power. I chose to sleep when I was tired, to celebrate when I had energy. These choices empowered me and eventually I chose to not just listen to my doctor but have a discussion. I chose to question treatment options and seek a second opinion when I wanted more options to better suit my lifestyle. As cliché as I am for saying this, I did choose to take my life back because a sandwich showed me that my diagnosis can only take what I give it the power to take.

Three years and a college degree later, I am choosing a life that fulfills me. I took a job as a music therapist where I can give clients choices every day. While everyone has a different diagnosis and story, I know from experience that inevitably every diagnosis comes with the sense of loss of control, and I can proudly provide options to give that control back every day. And that’s my silver lining and the reason I will be forever grateful to colitis.

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Thinkstock photo via DragonImages.

Originally published: March 2, 2017
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