Wednesday, May 23, 2012

Petitioning TV Doctors and Health Experts to Talk About Interstitial Cystitits

If you have ever had a chronic disease, you know how desperate you have been (or still are) for good information on what is happening to you. Often, people see segments on television shows that describe what they are feeling, leading to finally get an appropriate diagnosis. Sometimes, being able to point to these shows creates a sense of validity in a situation where patients have felt the need to explain themselves over and over.

Because of this, patients often plead with the nationally syndicated shows (like The Doctors, Dr. Oz, and Oprah) to cover their conditions. 

This situation has actually improved in the past several years as it pertains to interstitial cystitis/painful bladder syndrome. In fact, both The Doctors and Dr. Oz have mentioned interstitial cystitis/painful bladder syndrome on their shows. Generally, it is only a few minutes (or seconds) long and woven into a conversation about bladder/urine disorders. I am not sure we can get them to repeat these talks over and over without different angles to appeal to their producers.

For example, when you read their appeals for people to appear on upcoming shows, you don't only want to look for shows about bladder issues, but look for topics that are related:

*chronic pain
*being misdiagnosed
*misuse of antibiotics
*inflammatory conditions
*unintended weight loss or weight gain
*sleep disruptions
*sexual dysfunction
*pain with intercourse
*relationship issues as they pertain to diseases
*dealing with multiple health conditions
*traveling with chronic disease
*uncommon special diets
*stress management and chronic conditions
*hair loss (if you are on Elmiron and lost hair)
*female medical issues
*male medical issues
*exercise restrictions because of disease
*pregnancy complications (or high-risk pregnancies)
*lifestyle challenges of chronic illness
*job discrimination with chronic illness
*alternative jobs for those with disabilities
*cooking with chronic illness (or chronic pain)

In essence, almost anything these shows are asking for, someone in the IC community can speak to. Just don't expect them to devote an entire show to IC/PBS, nor give you more than a few minutes. What is important is to get it mentioned at all. (For hints on how to represent IC in these situations, see my blog post: Developing Your IC Elevator Speech.)

For future shows, see these links:

Dr Oz: Be on the Show
The Doctors: Be on the Show (There are some good ones listed as of the day I posted this!)
Oprah Casting Calls
Rachel Ray: Be on the Show

Of course, this list is not complete. Please feel free to share links for other shows in the comments. And don't be afraid to contact your local television stations and news outlets to suggest segments for your local area! 

Just keep trying!!!! Each time we get someone to utter the words "interstitial cystitis" or "painful bladder" we gain traction! Of course if you get a chance to appear on a show or tell your story, let us know here!

Author, Speaker, Patient Advocate

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

 **Please SHARE using the links below!**


  1. I find it is often easier to start local - I got my local newspaper to do a story on me and my interstitial cystitis. Then, one of our regional TV news crews picked it up and had my doctor and several patients on their morning health segment. We got a whole 10 minutes! After that stuff starts happening, things can take off. For example, if a lot of local papers start doing stories on a particular condition, the AP and Reuters will notice and do a widely distributed article, which means that it is more likely these nationally syndicated TV shows will notice, too.

    1. Do you have an online link about your article that you could email me? I would gladly promote it through my social media! Here is my email:

      Hugs! Julie B :-)

  2. I actually was planning on raising more awareness especially for IC. here goes the idea: I would ask all those who would be willingly to write a letter who are diagnosed with IC to write their story they can include in the letter: What they have been through, what they still go through, why we need more people in the medical field to be more educated about this, how having IC affects our lives daily, how if we had a cure would help make such a difference for all and most importantly why we need to get the word out about Interstitial Cystitis." The letters could be collected and sent out to major TV shows, news shows, newspapers and magazines across the country! I wonder if we can also try to get those who are supportive to us dealing with ic such as fiancees, husbands, wives, girlfriends, boyfriends, parents who can share how IC has had an effect on our relationships and how we have had to go threw good & bad times with them, but it has all made us stronger . I know a lot of people who we love & care very much about do not understand & give their us a hard time maybe that person who has been the most supportive person for us can write a letter to? With the picture idea i think it would be nice if we can use a sign that says "help us fight for our one wish to find a cure for Ic" let me know what you think of it & if you would want to be a part of this. My main goal is that through this the word about IC will get out and no one will be left suffering in silence any more, medical professionals will become understanding & others around us will be willingly to take the time to come educated about IC & be more accepting & less judgmental to us. IC should be a known disease & not something that people think is made up and people get turned away for having. We will together make a make a difference through this & stand strong together & Never give up threw this fight because together we are not alone in this fight.