Sunday, September 25, 2016

The Mental Gymnastics of Chronic Illness: Why Me?

How did I get interstitial cystitis?Let's face it. Everyone with interstitial cystitis or other chronic disease has asked the question. We wonder if antibiotics or gluten or too much sugar have caused our painful bladders. Or we blame our diagnosis of interstitial cystitis on an abdominal surgery. Or we try to pinpoint our diagnosis to a major stressful event. Of course, we don't just throw guesses around about ourselves; this fascination with why people get sick often extends to others: "Did you hear Peggy has breast cancer? It must be all of that coffee she drinks." Or just as likely, "Can you believe that Mike has diabetes? But he is so healthy! He always eats well and he just ran a marathon last fall!" Honestly, a sick person can never win the blame game!



When Healthy People Get Sick

Let's use my friends as an example. I see people who mostly live very healthy lifestyles, yet even among my dietitian colleagues, two are fighting breast cancer, one was just diagnosed with celiac disease, and another discovered she had multiple sclerosis a few years ago. These people are long distance hikers, marathon runners, yoga instructors, and even vegans. And me? I have always eaten healthy, was a normal weight, and walked four miles each day until I was diagnosed with IC and later with a genetic form of heart disease. From a cause and effect perspective this is perplexing, so we ponder and propose, fret and fume....why me? How did I get this sick?

Well, I am here to remind you (as I have to do myself!) that even if there are some possible triggers for many diseases or genetic predispositions to others, the fact remains that the causes of chronic disease like interstitial cystitis and illnesses like cancer and celiac disease are often a mystery even to doctors. In most cases, you didn't do anything to "cause" your body to "rebel." There are many complex factors that play into whether a person gets sick or not...so many factors that even if you think you "know" why you got sick, it is probably an overly simplistic explanation.

I have heard people say, I drank a lot of coffee, so I got IC. Maybe....but there are also a lot of people in the world who drink a lot of coffee who do not get interstitial cystitis. And although many IC patients describe their illness developing after a particularly stressful event like a divorce or building a house, others go through those situations and don't end up with painful bladders for the rest of their lives. That is just life.....and so is getting sick. So although there are those rare human beings like my husband's Grandma Grace, who made it to 93 without any serious illness in her life, most people get "something" eventually. IC is just our "thing."

So how is a person with chronic illness supposed to sort all of this out? Maybe we don't. Maybe instead of spending hours every day trying to get to the bottom of "why," we leave that question for the scientists to debate and we concentrate on getting better. We eat as many fruits and vegetables as we can to get natural sources of vitamins, minerals, and antioxidants. We choose high quality, lean proteins to help our bodies heal and strengthen our immune system. We consume a modest amount of healthy fats from olive oil and fish each day. We practice stress management techniques like meditation and taking deep breaths. And, of course, we move our bodies more. We take an active role in doing healthy things to make our bodies as strong as possible. What about you? What are you doing to foster a sense of wellness despite having a chronic illness?

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate

Helping Yourself Is the First Step to Getting Well

For step by step guidance for creating your own personal interstitial cystitis meal plan, see: Confident Choices®: Customizing the Interstitial Cystitis Diet.

For some basic, family-style, IC bladder-friendly recipes, see: Confident Choices®: A Cookbook for Interstitial Cystitis and Overactive Bladder

For health care workers:  Interstitial Cystitis: A Guide for Nutrition Educators


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3 comments:

  1. I always love your perspective and advice Julie! So, aside from the morning bun I ate this morning after a particularly stressful moment, I do eat mostly fresh, organic fruits and veggies. I can't stand mystery meat thus usually pick high quality meats from local butchers (chicken, turkey and beef). I almost always cook with EVOO but just don't care so much for fish darn it! My biggest challenge is just movement!! Work takes a lot of hours out of each day... and getting out and walking is challenging. Thanks again for reinforcing to patients that IC is not their fault. It isn't!

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  2. Thank you Julie. I really needed to hear this. I'm in a constant state of what and why with pains here and there that worry me daily. I guess we do what we can do, and that sometimes has to be enough. <3

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  3. Thank you Julie. I really needed to hear this. I'm in a constant state of what and why with pains here and there that worry me daily. I guess we do what we can do, and that sometimes has to be enough. <3

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