The Struggle to Overcome Interstitial Cystitis Needs Help

Marlena says: It’s been my experience that those in the daytime industry–and its fans–have big hearts and are very charitable. Today I am departing from the usual Marlena format to reprint a story I recently wrote for the ICA Update magazine, published by the Interstitial Cystitis Association, about my forty years of experience with a very painful incurable disease called interstitial cystitis. (I was diagnosed in 1981, the year I became editor of “Afternoon TV” magazine.) The ICA Update article is titled “No Soap: The Story of IC and me.” and talks about how I’ve managed to cover soaps and other day parts of TV as a journalist, at the same time suffering from this dreadful disease for the last forty years. My story is typical of the life stories of the thousands, mostly women, who also suffer from this little-known malady. Hopefully, sharing my story will help increase awareness and encourage further research. IC is erosion of the bladder which comes and goes with awful flares and to be honest makes you a prisoner of the bathroom.  How many great soap cliffhangers have I missed? Plus, this is a nocturnal disease that makes nighttime and sleeping holy hell. The Interstitial Cystitis Association was established the same year I developed IC.  The ICA promotes solidarity for people with IC with message boards through which I’ve met many other sufferers. The ICA sponsors ongoing research and provides physician referral to its many members.  Their website is icahelp.org.  If you’d like to make a donation, mail it to the Interstitial Cystitis Association, 388 S. Main Street Suite 440-#157, Akron, Ohio 44311. Recently I was pleased to tell my story on an ICA YouTube podcast.

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NO SOAP: THE STORY OF IC AND ME

By Connie Passalacqua Hayman

1981 was simultaneously the best and worst year of my life. It was the year I began my career as a professional journalist, proudly named editor of a soap opera fan magazine called “Afternoon TV.” It was also the year I was diagnosed with interstitial cystitis, then a little-known disease.

Covering the soap opera beat for a national magazine was a dream come true, and I threw myself into it with an enthusiasm that is still strong after all these years. The job led to others and eventually to national syndication as I sought to be the first with the latest on everything from casting to storylines, digging behind the cameras for news of couplings and uncouplings, both fictitious and real life. I interviewed celebrities and soap creators and network moguls, scoring bylines in “The New York Times,”“The Washington Post,”“USA Today,” and many others.

Always, IC was there in my private inner world, dogging my steps. Always, there was the pain, sometimes just dull and muted, often sharp and getting worse, disrupting the orderly functioning of my body, despite the application of every treatment known to medical science at the time. IC broke into my world much the way breaking news so often interrupts the daily flow of soap opera’s storytelling. The awful difference is that IC isn’t just an annoyance. It really hurts.

This is the story of IC and me. Let’s begin with the glamour.

I started watching daytime soaps as a lonely teenager. Both my parents worked full time. I’d love to come home from school, perch on my father’s Barcalounger and, with a bag of potato chips, watch the three network soaps. I loved the characters. I watched every day, so they felt like real friends. There were 13 soaps then, with titles like “As the World Turns,” “Guiding Light,” “All My Children,” and “One Life to Live.” With a five day a week schedule, they were written to make viewers addicted. The strategy worked. I was hooked at a very young age.

“Afternoon TV” magazine chronicled the soap world monthly. As editor, I wrote the cover lines, did a monthly gossip column and, of course, interviewed soap stars. There were so many soaps in New York then. My assistant and I went constantly to the studios to watch them being taped.

Three networks were then making money on the very profitable genre (it financed primetime TV), and they treated the soap press like royalty, showering us with show mementos, from T-shirts to expensive embroidered jackets. (I still have a leather “Days of Our Lives” jacket.) There were soap parties all the time, often in such renowned restaurants as the Rainbow Room on the roof of Rockefeller Center. These soirees were always loaded with soap stars and fueled by the snack we hungry soap scribes craved: shrimp, shrimp, shrimp!

IC Makes Its First Appearance

In the early Eighties, New York nightlife was at its peak. Through a contact, I even got into the opening of Studio 54. Did I say nightlife? Of course, that’s when IC, a nocturnal disease, made its first appearance, and it hasn’t left since. A theater journalist boyfriend was on the press list for Broadway shows. We went to Broadway and off-Broadway openings and other events several times a week. The problem was my bladder would start to ache so much I never made it to intermission and had to take a cab home all the time. I was always in agony!

At the time, no one I knew had any idea what IC was. A urologist confirmed my diagnosis and told me not to eat acidic foods. Looking up a forbidden food list, I caught sight of a new group called the Interstitial Cystitis Association. It was so great to know I was not the only one suffering from this terrible disease. That fall, the newly formed ICA had its first meeting at the United Nations. I went and met the woman who founded the organization, Dr. Vicki Ratner. I have supported and championed the ICA ever since. Forty years!

IC invaded my life with painful flares almost every time I went anywhere. But I was determined not to let it stop me. I graduated from soaps to writing about primetime and then-new cable TV. I was a columnist for United Feature Syndicate. My stories went to papers all over the country. Even when I was in dire bladder pain, I had to produce, produce, produce.

If you are a working journalist, you are on the run and interviewing people all the time. Getting through important interviews without interrupting many times to pee was always a problem. Yes, I had lunch with Omar Sharif (he kissed my hand). Charlton Heston invited me to talk to him while he washed his car on the set of “The Colbys.” I interviewed a young Oprah Winfrey and Rosie O’Donnell, all the time having to go to the bathroom. It was worse when I was in pain, but a deadline is a deadline, and despite this awful disease, I did my job.

A Very Uncomfortable Helicopter Ride

And of course, my ultimate interview story was nearly interrupted by a peeing accident. When he was the very popular host of “The Celebrity Apprentice” in 1997, I interviewed Donald J. Trump. He took me up in his helicopter and gave me a three-hour tour of Manhattan. Somehow, I got through those three hours without peeing. And The Donald was a real nice guy. It was a once in a lifetime tour, but I was very happy when the wheels set down on the runway again. I’d bet Mr. Trump had never heard of IC. Now that he is President, wouldn’t it be great if he would use his influence to do something to alleviate our suffering?

Through the glamour of celebrity interviewing, there was persistent pain and the treatment it required. I went to a renowned urologist on Long Island initially. Then I started having bladder installations. Oy! What a hassle. After the treatment I would have to run home and pee (I had more than one urinary accident.) I met a nice man named Edward Hayman, who helped transport me to my doctors to get my treatments. He was very understanding of this disruptive disease. We were both journalists and adjunct professors of journalism at New York University. Eventually, we got married. His constant kindness in helping me when I am in IC pain continues. For both of us, IC has been a lifelong sentence.

Eventually, IC impeded my career. In 2015, I had a terribly painful flare combined with a very painful rectal fissure. I had what was commonly called a “nervous breakdown” and didn’t work or write for six years. Only my husband and a beautiful beagle boy named Nigel Barthomow-Smythe (named after a character on “One Life to Live”) got me through this period of pain and horror.

I finally met a wonderful and kind urologist who really understood IC. He prescribed painkilling drugs (then legal) which were a big, big relief. And he performed an operation on me, installing a Medtronix InterStim device in my back. It has helped ever since.

Coping With IC

How did I cope with IC all these years? First of all, I educated a lot of sympathetic friends. And I never, ever, ever go off the IC diet. This diet impacts just about everything I eat, but I find being strict with it the chief way of avoiding or at least reducing the pain. I’m Italian and as you know, tomatoes and tomato sauce is central to the Italian diet. No red sauce—it’s full of acid—OMG! Now I make everything with imported yellow tomato sauce. I can only eat white pizza. And my yellow sauce lasagna is so good it even won over my future Midwestern in-laws.

I have had some very bad dustups over the years with IC. I used to summer on Fire Island. Once I had such a bad attack, I had to take a 60-mile cab ride home in the middle of the night and go to the hospital. As all IC sufferers know, most staff in the emergency room don’t know anything about our disease and a visit to one is a waste of time. I once walked out of a busy city hospital in the middle of the night because no one had ever heard of IC and didn’t know how to stop my pain—or even believe I had a bona fide disease.

New Pain Medication Needed

And now when we sufferers have a flare, doctors are prohibited from prescribing opiates. I find this vastly wrong and almost insane given the level of pain I have had and continue to have. I once fell on crooked pavement and when I woke up in an emergency room, the doctors had installed a urinary bag without my permission. For almost a year, I had to struggle with a urine bag attached to my ankle. I had to keep waking up my sainted husband in the middle of the night to help me change it. What a disgusting year that was until I had the bag taken out. Barbaric is the word for the bag, and I wish it on no one.

Of late, I have participated in the latest IC treatment: pain management. Many of my friends go to it for pains in their back and it was recommended to me to be good with IC. Once a month, I go into Manhattan to see a doctor and have a catheter stuck into the thin skin of my hand and sit there for more than an hour as lidocaine is injected into my veins. (To my doctor’s chagrin, I always scream out loud when the catheter is inserted into my hand. It really hurts.) Most of the doctors who have treated me have been very competent and kind. But once in a while someone misses. I had blood all over my new blue jeans once when I was infused. I’ve found this uncomfortable treatment moderately effective, but you have to keep on going back and back.

Of course, there is no cure for IC. However, there should be a better way to treat sufferers like us. I’ve found being constantly in pain very debilitating. I wonder what my life would have been like if I didn’t have this terrible handicap.

Early on, I discovered the message boards on the ICA website and participated in them. That other people have this dreadful incurable disease and learn to cope with it means a lot to me. Thank goodness for the help and solidarity of the ICA! It and its supportive members have helped me so much over the last 40 years!