You are here: IC Network > IC Lifestyle & Exercise > February 2002

The Psychological Effects of IC

The History Of IC

IC has been known to medicine for a long time. At the turn of the century IC was named Hunner's disease after a doctor who discovered ulcers on the bladder wall of a patient. However, the male-oriented field of urology largely considered IC a rare disorder of post-menopausal women, as well as a malady caused by hysteria. Hysteria was at that time a diagnosis often used for unexplained symptoms and an array of misunderstood illnesses, predominantly affecting women and thought to be caused by repressed emotions. Even later, symptoms of IC were attributed to emotional problems when urine tests came back negative for infection and there were no signs of Hunner's ulcers.

In the 1970's Hunner's ulcers were recognized as rare in patients and not necessary for a diagnosis of IC. By the mid-80's, workshops, which were held by the National Institute for Diabetes, Digestive and Kidney Diseases (NIDDK) produced the guidelines for selecting people for studies of the treatment for IC. Diagnostic guidelines for IC were established thanks to prominent urologists.

Unfortunately, until this time, medical schools and textbooks continued to teach and attribute the symptoms of IC to the old theories. The trickle down effect from the theory of hysteria has created biased opinions of IC in both traditional and alternative medicine.

The Psychological Effects Of IC

Although IC is a physiological disease, the effects are emotional. The pain of IC automatically induces an emotional response. In the early 90's, Naomi McCormick, Ph.D., wrote in a joint article with pain specialist Daniel Brookoff, M.D., "It is nearly impossible for an IC patient to be emotionally neutral about pain." The pain of IC is carried to the center of the brain that carries emotion, and because IC affects an internal organ (the bladder) it is considered visceral pain. Visceral pain sends messages to the part of the brain called the limbic system, which regulates arousal and emotion. The messages from the bladder pain can make a patient feel upset, emotional and depressed as a result.

Unfortunately, the type of behavior that IC pain sets off is similar to the type of behavior seen in patients with post-traumatic stress syndrome, especially those who have been sexually abused. IC patients may be seen as emotionally laden victims of a traumatic experience demonstrating hyper-vigilant behavior (the need to be on guard against harm), instead of a person in need of medication to calm the unsettling symptoms of interstitial cystitis. However, it's not uncommon for IC patients to experience their first symptoms of IC during or after a stressful event. Perhaps this has to do with a "genetic blueprint," mentioned below.

Jay A. Goldstein, M.D., explained in an early Fibromyalgia Network newsletter how patients (fibromyalgia and chronic fatigue syndrome) are born with a genetic blueprint. He explained that a genetically predisposed individual may be "overtaxed" and "depleted" of important neuro-hormonal transmitting substances, and may develop her/his illness during stressful times. Goldstein believes that "this might explain why most patients develop their illness during situations of increased environmental stressors of various types." These individuals may not have what it takes chemically to fight infections, over-exertion and trauma.

We Are "Copers"

Although stress may not always be the trigger for IC, the stress and emotional impact caused by IC symptoms is ongoing. Most of us must deal with awareness in our bladders every day. We cannot leave our bladders with baby sitters while we go out to run errands, go to our jobs, go out to dinner or on vacation. Having IC is like having the responsibility of a baby for the rest of our lives, 24 hours a day. We have to take care of and pay attention to the baby, or the baby can make our lives miserable and wear us down. The baby likes schedules, lots of sleep, regular meals and a special diet. The baby needs to feel safe and secure at all times.

IC is a daily responsibility. People without IC usually have the benefit of knowing that their stressful responsibilities have an end in sight. For instance, jobs can be changed, children will grow-up, parents, in need of care, will sadly pass away at some point. IC, as far as we know at this time, isn't going to grow up and leave, and we can't really leave it (yet!). Although IC expresses symptoms and anxiety differently in each patient, it is not a situational stress that will resolve in time. And, even though most of us build a certain amount of tolerance to the everyday bladder sensitivity (not the painful flare-ups), we still have to place our bladder needs first.

The world with IC can become very small. And, problems can seem too big to overcome. Sometimes the limitations can make us feel stuck, sometimes with no hope for the future. This is why it is absolutely necessary to take a good look at ourselves and recognize our successes, and the people in our lives who truly care about and admire us. Remember, we are "copers" and we have what is called psychological resilience. If others could just experience five minutes of a painful IC flare-up we would be considered heroes.

Something To Think About

The following questions are meant to empower you. If you don't like some of your answers, think about what you can do to improve the situation. Try to focus on the positive and try to be totally honest with your self. Give yourself credit where credit is due. Print out these questions so you can write out your answers. Give your answers a lot of thought. Writing about your thoughts and feelings may help you to understand your life with IC better.

"How did you see yourself before IC?"

"How do you see yourself now?"

"How do you think your friends saw you before IC?"

"How do you think your friends see you now?"

"In what way do you think that you've changed since you've had IC?"

"Can you ask a friend this question?"

"Were you diagnosed with IC when you were young? If so, how do you think this has affected you?"

"Were you diagnosed with IC before it was recognized as it is today? If so, how do you think this has affected you?"

"Do you think that you have to hide your IC (for example, at work), or do you choose to hide your IC? If so, what affect do you think this has on you?" " What do you think would happen if you didn't hide it"?

"Do you feel safe or feel in control around your family and friends? If not, can you think of a way to start to change this?"

"How does your background (family beliefs, religion, culture, past problems) influence how you accept, or don't accept your IC (not the pain of IC)?"

"Do you push yourself too far so others won't think you're lazy or neurotic? If so, why do you think you do this?" "Do you think of yourself as lazy and neurotic when you aren't pushing yourself? How can you change this so you can take better care of yourself?"

"Can you give yourself a special day once a month, a day where you are in control without the demands of others and daily routines"? Give your special day a name. For instance, tomorrow is going to be a "your name day."

Please feel free to e-mail me at the link below. I'd love to hear some of your answers and I'm sure they would be helpful to other IC patients. Your information will be strictly confidential, unless you would like to share your name.