Interstitial Cystitis Mental Gymnastics - Part Three (The Blame Game)

The blame game I am talking about today is the one we play with ourselves. Sometimes having a chronic illness like interstitial cystitis seems like the biggest thing in our lives, especially at first. It can be easy to use the disease as a scapegoat for everything bad that happens. Of course, that means we are blaming ourselves, which in most cases is not fair, and certainly isn't healthy.

A great example is the time my family was driving to Florida from Michigan, and we had to stop just short of our Disney destination for me to go to an emergency room. I thought I was in a horrible flare, but actually had a raging bladder infection. At the time, I felt guilty and "blamed" myself for our family "losing" a day of vacation. Let's step back, however, and digest this logically:

1. First, whether it was an infection or an IC flare, it wasn't my fault. Period. Nothing I did made me sick. Nothing I did gave me IC. 
2. Second, my family did not really lose a day of vacation. While I was in the ER, they were back at the hotel swimming in a pool and having a great time. It wasn't the Mouse's pool, but it was a pool, and the weather was warmer than it had been in Michigan when we left. No one else perceived it as a problem, why did I?
3. Third, if I hadn't gone to the ER, I would have become that much sicker. Delaying treatment is never better than seeking help.
4. Finally, it could have been anyone else that had gotten sick....and they have on other vacations. My husband broke a foot right before we went to Mackinaw Island once. He even rode a horse on that trip. Then, he broke his hand in a car accident before we took a two week cruise. I was totally understanding and even bought him an electronic reader to take so he could read more comfortably. My middle child used to get sick with something nearly every time we traveled or took a vacation. On one trip, I spent the day in the hotel room with her while the rest of the family went to a water park. And, each of my kids have missed parts of vacations because of baseball tournaments and band camp.

Do you sometimes blame yourself when bladder symptoms upset your family's plans? Then it is time to put things in perspective. Try not to exaggerate the burden your condition puts on others. It isn't fair to you and can set a bad precidence where everyone starts to inappropriatly blame you too. Instead, practice taking disruptions in stride and even with a sense of humor. Things happen. People get sick, and everyone gets something sometime. Why should we treat ourselves with less understanding and compassion than we do the rest of our family?

PS: I almost forgot to tell you! When I was at the emergency room in Florida, I used my "Restroom Access Card" from the Interstitial Cystitis Network. The physician's assistant looked up information on IC and was able to help me much more effectively than if I had to explain everything from scratch. These cards can also be handy if you are on a plane or need restroom access in a place that generally doesn't have public restrooms. A bargain at $2.49 for 3.

Related Posts:

Fighting Interstitial Cystitis Flares 
IC Patients - Are You an Introvert or an Extrovert?
Mental Gymnastice Part One (Consider Intentions)
Mental Gymnastics Part Two (Turning Negatives to Positives)

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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

 **Please SHARE using the links below!**

Interstitial Cystitis Mental Gymnastics - Part Two (Turning Negative to Positive)

I have a question for you. If you have a chronic illness like interstitial cystitis/painful bladder syndrome, do you think of yourself as "sick"?

I have to admit, now that I have my symptoms under control, I don't think of myself as sick....at least not on a daily basis. Watching what I eat, taking my medications, and tapping into coping skills helps me maintain a semi-healthy mindset. I can do my work, fix dinner, encourage my family and friends, and basically enjoy life.

That being said, there are times when I can't rationalize my health problems away, particularly when I have to fill out my health history for a new doctor. It is one thing to list the surgeries (three C-sections among them), but quite another to write "interstitial cystitis, hiatal hernia, Hashimoto's thyroiditis, ascending aortic aneurysm, sacroiliitis, etc..." and then list the medications that go along with all of those conditions. Of course, it really hits me between the eyes when I am faced with something I want to do but can't.

Now, common sense tells us that living with a "healthy" mindset has to be healthier than living with a "sick" mindset. But how can we switch our thinking when we are constantly frustrated by fickle diseases and multiple conditions? Here are some ideas: 

1. First, embrace the philosophy of the Serenity Prayer: You know the one.....
   
   
   God, grant me the serenity to accept the things I cannot change,
   Courage to change the things I can,
   And wisdom to know the difference.
   
   This is huge, folks. If you have conditions that you cannot change, then you need to learn coping skills to handle them. If you have conditions that are within your control, then you need to take control.
2. Second, take ownership of your body. If there are things you can do to manage symptoms (like avoiding IC trigger foods) then do it. Don't blame others for what you can control. Don't complain about the things you need to do to be "well." Just do them. You only have one life regardless of the body you have. Treat it well...there are no trade-ins.
3. Third, learn to be a cheerful "swapper." If you can't ride a bike, learn to appreciate walks and hikes. If you can't drink alcohol, embrace the role of designated driver. If you can't eat some of your favorite foods, experiment with substitute ingredients or identify yourself with new favorites. You get the idea.
4. Fourth, minimize the time you spend on "sick" activities. I package up my medications and supplements in little plastic zip bags once every couple months. Yes, it is depressing, back breaking, and takes a couple of hours. But, once it is done, it is done. I don't have to think about it for weeks. I also have streamlined my doctor appointments. I found I was running to one doctor or another week after week. I started to resent the time I spent waiting in offices. When it dawned on me that I only had so many life minutes, I asked my gynecologist if he would follow me for all of my conditions as long as I was stable. Thank God he agreed. 
5. Finally, find a way to reach out and help others. This has probably been one of the most rewarding things about having interstitial cystitis. Eventually, I earned the wisdom to share with others who were trying to figure out this crazy disease. I started by answering questions at the Interstitial Cystitis Network's forum and writing a column for the Interstitial Cystitis Association. I eventually wrote three books about IC and Diet, and started counseling patients. Lately, I have been speaking to support groups and educating dietitians and nurses about the IC Diet. It helps ME to help others!

The underlying point here is to focus on what you can do and minimize the time you spend dwelling on what you can't. Or in other words, stop defining yourself by what you can't do and start redefining yourself as a person who is in control of their life. It definitely takes some mental gymnastics and discipline, but the pay-off can be more days washed in positivity than buried in pessimism. And that is healthy for anyone!

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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

 **Please SHARE using the links below!**

Interstitial Cystitis Mental Gymnastics - Part One (Consider Intention)

I used to read Ann Lander's advice column all the time when I was growing up. I think her common sense wisdom shaped a lot of my thinking. One time, a young widow wrote to Ann complaining that people at her husband's funeral said "terrible" things like, "At least his suffering is over," and "Time heals," and even “You are still young, you can marry again." Ann's gentle advice? Forget their words and appreciate their actions. Those people were simply doing the best they could in an unimaginable situation. The thing to remember was that they were there…they took time out of their day, maybe even a day off of work to show their respect, love, and support. 

I often hear people with chronic illness like interstitial cystitis complaining much the same as that widow who wrote to Ann Landers. Here is my point. People’s words may not always be perfect, but who among us can come up with the exact words appropriate for every situation? This story helps me remember that 99.9% of the people we meet are not malicious, mean, deceitful, or out to “get” us. People who go to funerals, who ask about us when we are sick, or who say something "terrible" rarely do so with bad intentions. On the contrary, most of the time they are doing their best to show they care. For us to assume that everyone can read our minds and know exactly what we need to hear at the exact moment we need to hear it is arrogant and maybe even narcissistic.

If only for today, let's cut the people in our life a little slack. Life is short. Situations are complicated. There are no right or wrong words. Accept love with a spirit of humility, and don’t read too much into people’s inadequacy to express themselves. Modify your expectations and appreciate other peoples’ intentions and good hearts. 

Oh.......and pray that when you say something that accidentally hurts another person, because you will, that the other party receives your words with an equally gentle and understanding heart.

Julie Beyer, MA, RDN

Author, Speaker, Patient Advocate

www.ic-diet.com  

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

 **Please SHARE using the links below!**