Monday, January 10, 2011

Interstitial Cystitis: Stages of Acceptance and Emotional Challenges of Chronic Illness

It is common for people who are diagnosed with a chronic illness like interstitial cystitis to pass through the same “Stages of Grief” that were first described in 1969 by Elizabeth Kübler-Ross in her ground-breaking book On Death and Dying: denial, anger, bargaining, depression, and acceptance.

The important thing to recognize is that Kübler-Ross describes a cyclical journey through these stages to a state of acceptance. Because of this, some contemporary therapists have actually renamed this process the “Stages of Acceptance.” Individual with chronic illness may experience the stages in a different order and may even re-cycle through the stages before coming to some sense of peace with their situation. In fact, it is not unusual for IC patients to describe what they feel as they accept their condition as a “new normal.”

It can help to identify what stage you are in, in particular, how you feel about implementing an IC diet. If you are in denial or are angry in the beginning, you are not likely to make many changes. The important thing to remember in these stages of denial and anger is that you not alone. Almost everyone does or should make better food choices for one reason or another whether they are overweight, diabetic, or have a history of heart disease in their family. Your "disease" just happens to be interstitial cystitis.

Another common situation you may face as a chronic illness patient is bargaining. It may be hard to see, but a patient in this stage is getting closer to accepting their situation. They realize that they need to change their diet, but may not want to go all the way. You may be saying things like, “I will do anything you say except give up my tea.” Or, you might procrastinate changing your diet telling yourself that you will start an elimination diet after your son’s wedding (or after the cruise, or after graduation, etc.). The fact that you at least partially recognize your need to change is a forward step on your journey.

The fourth stage defined by Kübler-Ross is depression—characterized by a sense of “pre-acceptance”—the idea that the person has generally accepted their condition, but is experiencing heavy emotions about it. Many IC patients actually get stuck in this phase for a long time, especially when it comes to their food. They may follow an interstitial cystitis diet, but feel beaten down or resolute to never enjoy food again. A good tactic to try if you find yourself in this phase is to try new recipes one day a week or brainstorm substitutions in your diet for foods you cannot have. These baby steps of taking control can be a preview to acceptance.

Finally, what does dietary acceptance look like to an IC patient? As you may guess, this depends entirely on the person, but I like to think of it as a more active, peaceful stage than the previous four. In short, people who finally accept their situation become more engaged in the process of helping themselves. Interstitial cystitis patients who accept the fact that they need to change their diet can focus their energy on determining their personal trigger foods, researching new recipes, and creatively finding substitutes for foods they may be missing. These patients often make great mentors to newly diagnosed patients.

What stage are you in? How have you managed to navigate the various stages of acceptance?
Adapted from Interstitial Cystitis: A Guide for Nutrition Educators

Julie Beyer, MA, RDN
Author, Speaker, Patient Advocate Just Tell Me What to Eat!

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 


  1. Thanks Julie! Great article! The problem I have is that I've been to three doctors all wonderful people but with differing opinions. Each time I leave the first appointment appointment with each new doctor or they make a change in my care It seems I start the process all over again. Also wondering if it is normal to go back to some of the stages you have already been through because of a life event. For example, Christmas, how many of us got angry or depressed again?


  2. Annette, yes, that is an important thing to remember. People will often cycle through the phases. One thing I try to remember is that everyone "gets" something at some point--arthritis, diabetes, cancer--IC is just our thing. So, just as some IC patients may have cycled through anger or depression during the holidays, others probably did too.

  3. This is the hardest stage of having this kind of illness. It's important to free yourself from stress and maintain a healthy life style.