If you're living with a chronic illness, you're in the right place.

Thursday, July 31, 2014

The Illusion of Control

5:50 AM Posted by Tiffany Taft , , , ,
I think almost everyone wants to feel in control of their life.  When we feel out of control it naturally can lead to an array of negative emotions - anxiety, irritability, sadness, panic, or depression to name a few.  Being diagnosed with a chronic medical illness throws the idea of "control" into a bit of a tailspin.  Our body has decided that it's going to do something against the status quo, and sets a new standard of operations, if you will, that doesn't jive with how things should be.  We do our best to reverse this tide, but it's like the disease does everything it can to get back to what it thinks is the new normal.  What I like to call the Dr. Ian Malcolm effect.

In the chronic illness world, the word "control" comes up a lot, doesn't it?

Take this medication to control your symptoms.
Is your disease under control, yet?
You've got to fight to control your [insert disease here].
Why can't I get this flare up under control?

This is a pretty complicated topic that can't be addressed in one blog entry.  So today I wanted to discuss how the need to control ones condition can become a problem in the context of chronic digestive illnesses and food.

Via The New Yorker
I've seen hundreds of people living with these conditions.  For some, there is a very clear relationship between food and their symptoms.  A person with Celiac disease gets very ill if they eat foods that contain gluten.  Someone with eosinophilic gastritis has an increase in inflammation in their stomach when they eat eggs or soy (if those are their triggers).  But for other conditions, like Irritable Bowel Syndrome or Inflammatory Bowel Disease, it's not so clear most of the time.

If I had to guess, 98% of the people I've worked with have reported that they've tried to use diet or food elimination to control their symptoms.  It makes sense, really.  My digestive system is giving me trouble so food must be part of the problem.  Now, which foods are the problem?  This is where it gets a little hairy, and unfortunately can really wear on people's mental well-being.  I've met people who've had IBS for decades and are still trying to figure out the right dietary combination to control their illness.  It doesn't help that the internet is loaded with diets for these conditions, some even claiming to be a miracle cure.

One of the first questions I ask someone who says they've cut a certain food or foods from their diet is if they noticed that every single time they ate that food that they had symptoms.  The answer is overwhelmingly something like this:

No, actually. There are times I can eat it and I feel fine.  It doesn't make any sense, but I still think it's best to avoid it.

When only 1 or 2 foods are eliminated, the impact of this choice on quality of life tends to be minimal.  Early on in my Crohn's Disease tenure, I couldn't eat popcorn without experiencing significant pain.  So I stopped eating it for about 4 years (that made going to the movies fun).  But if popcorn turned into 20 foods, especially common ones, or entire classes of foods like dairy or gluten, eating would become slightly more challenging.

A lot of the time challenging isn't really the way people describe it.  It's more like anxiety producing, socially limiting, and depressing.  If that were the case, I'd certainly want to be sure that the ratio of symptom flare up to the food I stopped eating was 1:1, not 25:1.

As I said, food makes sense when dealing with digestive symptoms.  It's something I can control.  Unfortunately, a lot of the time symptoms remain as a person's diet becomes more limited.  They become afraid to eat out at a restaurant, a friend's house, or a party so they stop going because they can't control what's in the food they may eat.  They feel embarrassed by special requests they may need to make, frustrated by their lack of food options, and resentful that they can't just eat like everyone else.  Yet their symptoms aren't under control.  Eating can even become disordered - we're not talking about anorexia nervosa or bulimia, but the need to find the right foods can become so severe that the person's quality of life is horrible and their nutritional status suffers.  A colleague of mine once had a client who only ate white foods but continued to experience chronic symptoms.  Think about that.

When I talk about this with clients, the theme is ultimately the need to feel in control of what feels like an uncontrollable situation.  Included in our treatment goals are to help them resume as normal of eating as possible by letting go of food as a means to be in control, without feeling anxious that they'll lose control over their illness.  As other triggers to symptoms are addressed, along with some acceptance that sometimes the disease's actions just aren't going to make sense, people are able to let go of controlling food more and more.  And eating a turkey sandwich becomes normal again.

Dr. Taft