Did you all see the segment about interstitial cystitis (IC) on The Doctors TV Show on April 16, 2009? It was certainly a start and gave more attention to IC than any national program has in a long time. We need to remember that it is topics like this that OTHER shows pick up on and the ball gets rolling very quickly.
Actually, we all should think about what we might say if we ever get the opportunity to discuss this with the press or with a show like The Doctors. They call it the "elevator speech" in the business world....what can you tell people about something in the short time you have with them in an elevator car ride. Here are my suggestions:
1. Give people a visual right away.Mention "interstitial cystitis" but quickly say it is also called IC, bladder pain syndrome, or painful bladder syndrome. If you have ANY influence over production, suggest that they put the words "interstitial cystitis," "IC," and "Painful Bladder Syndrome" in some sort of text visual. You can also say that approximately two million people have the disease--mostly women, but men and children get it too. (Edit 6/29/11: The most recent epidemiology numbers estimate 8 to 11 million people with IC in the US.)
2. Briefly tell the three main symptoms.For example you can say, "The main symptoms of interstitial cystitis are frequent urination, an unexpected urge to get to the bathroom immediately, and pelvic pain. The pain may or may not be perceived as coming from the bladder."
3. Keep the concept simple.For example, "For unknown reasons, IC patients have painful bladder inflammation and sometimes even ulcers in the bladder lining. Patients feel like they have a bladder infection all the time, but the urine does not show bacteria if cultured."
4. Talk about diagnosis without instilling fear.We don't want to stir up any more worry or frustration than a bladder patient may already be experiencing. For example, "If your urine cultures are negative, you may want to seek the help of a urologist who specializes in bladder disorders. They will likely ask you a series of screening questions, may put a potassium solution in your bladder to see how you react, and may do an outpatient procedure called a hydrodistention to get a better look at your bladder lining and to rule out any other bladder disease."
5. Be very general when discussing treatments.It is too hard to get into everything, but following an diet is something that can help someone right away and is important to mention. For example, "The treatments for IC vary, however dietary changes can make a huge difference in symptoms." Or, "IC patients need to be "patient" in order to find a combination of treatments that can help them." You can also mention the negative effects of cranberry juice if you have time. This often gets someone's attention since they usually expect the opposite.
7. Finally, project an image of "hopefulness."
So many times we want to tell the world how awful IC makes us feel, but honestly, that isn't as helpful as telling people, "IC can be confusing because a person with can be very sick and not look like it. However, the good news is that they CAN get better! It just takes some time!"
All of these are quick sound bites that can even work with family and friends. We really cannot tell EVERYTHING we know about interstitial cystitis, but we have to remember to point people in the right direction, since that is the most important. I hope that I can remember this if I am ever presented with the opportunity to talk about IC to the media again!!!
Author, Speaker, Patient Advocate
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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