Coping with the Diagnosis of UC
Accepting and managing a diagnosis of chronic illness can be an overwhelming prospect. As the peak incidence of IBD occurs between the ages of 20 and 40, many individuals who have otherwise enjoyed a life of good health are blindsided by the seemingly abrupt diagnosis. Given that people manage stress in different ways, there is no single coping mechanism that is applicable to everyone. In general, however, most practitioners would agree that a proactive, hopeful outlook aids patients as they navigate through a new diagnosis. Below is a recent article from the New York Times regarding coping with the diagnosis of UC that I found honest and insightful and wanted to share with others:
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Cases - New York Times
"When the Body Decides to Stop Following the Rules"
By LOREN BERLIN
Published: February 26, 2008
"Every day over breakfast, I fill three pillboxes. Fifteen pills in the morning, 3 at lunch and 8 before bed, for a total of 26. To my surprise, I find pleasure in the sorting, as it is one of the few moments when I can pretend I have some control over the bizarre war raging in my colon. When I learned 11 months ago at age 29 that I had a chronic illness, I understood that my life was going to change. I knew I would stop eating certain foods, limit stress and think more strategically about when to have children. What I didn't anticipate was the loss of control over my life that I thought I had, until the gastroenterologist uttered the words "ulcerative colitis."
He explained that for reasons unknown, my immune system was ravaging the walls of my large intestine, mistakenly trying to fight off a nonexistent foreign invader. Short of removing the colon, he said, there was no cure - leaving me to contend with unpredictable bouts of abdominal pain, bloody diarrhea, fatigue, weight loss, dehydration and night sweats. Forever.
Before my illness, I didn't realize I had been operating on the assumption that there was an equation to explain how things played out. It was almost like physics. If I followed certain rules, I would get the desired outcomes. I wanted to lose 10 pounds. So I quit eating after 8 p.m. and watched my waist shrink.
I wanted to find a good man. So I treated strangers with respect and am now engaged to my best friend. It didn't always work. But generally, if I made the investment, I got the return.
But incurable illness doesn't operate that way. Dealing with it is not about studying harder or developing a regimented routine. Nor is it about karma, becoming a better person or learning to like leafy greens. Rather, it is about hope, about believing that things will work out even if I don't know how.
It's hard. Not only am I adjusting to a chronic illness, but I'm also accepting that I am vulnerable to countless things beyond my control-that great haze that is the unknown.
With ulcerative colitis, the unknown is exploding around me like cannon balls. I could end up in the hospital with liver failure induced by my medicine. I could experience a vicious flare-up that results in the complete removal of my colon. These are only two of many possibilities, all of them frightening.
When I get scared, I focus on a definition of fate provided to me by a professor in college. Describing an ancient Greek perspective, he explained that fate could be imagined as a plot of fenced land. The individual cannot control where the fence stakes are placed. But every person determines for herself how she maneuvers within the enclosed space. That I have ulcerative colitis is a fence post hammered into the ground at a very unfortunate angle. How I live my life with the disease is my decision.
And my decision is to be hopeful. There is evidence to support that hope. For starters, those 26 pills, which represent the achievements of a host of scientists and the sustained investments of pharmaceutical companies. With so many resources invested in my disease, it is likely that medical advances will generate improved therapies.
I feel hopeful, too, when I consider the immense creativity of the natural environment. In a world with the imagination to invent emeralds and giraffes, Spanish moss, hound dogs and icicles, it's not quite so hard to believe that my life will evolve nicely, with or without the benefit of organizational tendencies.
Trusting in something outside myself is difficult. But I can say that I am learning to believe that things will work out well, just because they will. In one form or another, my life will continue, and it will continue to include the man I am marrying, family, friends, helpful strangers, gregarious toddlers. At least, it will for now. And that's a start."
Loren Berlin lives in North Carolina and works at Self-Help, a group that aids low-income families.