Interstitial Cystitis: My Relentless Bladder

interstitial cystitis personal story
I even skipped my high school graduation because I knew I would not make it through the ceremony without needing a restroom.
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“I’m worried about you needing a bathroom so much,” my father shouted out to me as I bolted to the bathroom for the twentieth time that day. “I know,” I laughed. “I should camp out by the toilet all day.” A perplexing look grew over my father’s face as he stared off into the distance. I was sixteen at the time.

For the next two years, I didn’t give the urinary frequency much concern. I was too young and naive to realize the impact my bladder would later have upon my life. I remained fairly carefree, although I withdrew from some social activities. I even skipped my high school graduation because I knew I would not make it through the ceremony without needing a restroom. If only my bladder would nap on such occasions.

Eventually, attendance to weddings, concerts, and funerals became challenging. I’d arrive early to social events and grab a seat in the back in case I needed to leave. At funerals, I’d usually avoid going to the burial grounds. For everyday activities, I strategically mapped out all available public restrooms in my town.

Friends and acquaintances kidded me about living in the bathroom. I laughed along with them, but inside I began to feel rather sad and isolated. Many thought my urinary frequency was rather childish and silly.

At age eighteen, I dared to take an exhilarating cross-country trip for six months with my first husband. I knew this might be my only chance to travel if my bladder condition worsened through the years. As I crossed state boarders, I encountered every kind of bathroom one can imagine. I sat on toilets fit for a queen, toilets at dark and musty gas stations, and hovered over rotten wooden seats at the most repugnant outhouses on the planet. Mother Nature graciously offered her facilities at times, too.

After returning from our once-in-a-lifetime trip, my husband and I settled in Boston. I was hired by a publishing company to do secretarial work. I chose to walk three miles to the office instead of riding the trolleys that had no bathrooms. When walking, I could make pit-stops along the way. Concentrating on my secretarial job was difficult because of the discomfort in my bladder. Although co-workers saw me constantly running to the bathroom, they could not see the emotional struggle inside of me as I tried to cope with urinary frequency. I found myself walking faster, hurrying conversations, and doing anything to quickly vacate a social encounter. Others also didn’t realize the intensity of the sensations I was experiencing. It seemed a load of bricks was bearing down on my bladder, and the pain continuously distracted me.

As the urgency of needing a bathroom increased to nearly sixty times a day, I gradually accepted that my bladder was far from normal. Sleepless nights were common.

I eventually divorced my husband, but that had nothing to do with my bladder problem. I moved back to my home state of New Jersey to attend college. During this time, my bladder was at its worst. Sitting through classes was a challenge. I’d squeeze my legs together until I thought my bladder would explode. When I requested permission to use the bathroom during tests, some college professors thought I was cheating. If professors insisted a class be held outside on a nice spring day, I’d panic. There were no bathrooms outside except the woods, and I certainly was not going to use the woods during a class. Again, my only option was to squeeze my legs together to prevent my bladder from bursting. After class, I would rush back inside and run to the bathroom.

During my final year of college, my father’s sister, Mary, moved to a health facility that was fairly close to the college I attended. She had previously lived alone in New York; I had not seen her in over twenty years. My father also had another sister, Rose, who my father told me had died of unknown causes in her thirties. I had never met Rose. I had only seen pictures of Rose, and I had been told my face resembled hers. It somehow comforted me that Rose and I looked alike. It was my only connection to her at the time.

One day, while I was visiting my Aunt Mary at the facility, she noticed that I kept darting to the bathroom. “You are like Rose,” she remarked with concern in her voice. “Why?” I asked. My Aunt exclaimed, “She went to the bathroom incessantly. Your father and I think she committed suicide; she was hit by a train.” My Aunt proceeded to tell me that her family, at the time, had no indoor plumbing. Apparently, Rose was constantly running to the outhouse, and none of the doctors knew what was wrong with her. Furthermore, few people discussed such private matters back then. My Aunt continued, “Your father and I think that Rose could not take the torment of her bladder anymore.” “Wow,” I replied. I suddenly recalled my father’s look of concern. I was taken aback since my father had never told me of his sister’s probable suicide.

I was finally in my last year of college, and despite my bladder condition, received outstanding grades. As you might have guessed, I passed on attending my college graduation ceremony and any parties after it.

When I again entered the working world, I hid my bathroom trips from employers the best I could. At business meetings, I’d grab a chair as close as possible to the exit, but other employees’ chairs sometimes blocked my escape. To push through the crowd would bring too much attention, so I’d remain captive. I dreaded any form of recognition as an employee for fear there would be a meeting of appreciation. It wasn’t the fear of being the center of attention that I dreaded; it was the high possibility of suddenly having to leave for a bathroom and being utterly embarrassed by that. On occasion, my boss held meetings in a large auditorium. As the rest of the employees sat in the front, I took refuge in the back so I could run to the ladies room when needed without being noticed. I was sad and frustrated because I couldn’t be a part of the group like everyone else.

I was usually a rather lively and perky person, but the stress of my condition super-charged me. I found myself nearly running down the hallways at work to make up for time lost in the bathroom. This resulted in my having a reputation as a very hyper person. Relaxation was impossible. To this day, my quick pace has been hard to shake because the disease has literally transformed me.

I finally decided to see a doctor about my condition. The first doctor merely told me to drink more water. I eventually found a urologist who diagnosed me with interstitial cystitis (IC). This was done via a biopsy of my bladder and other tests.

As my loneliness increased, I found myself thinking more about Rose. If only I could have known Rose. We could have encouraged each other and shared our hardships. Perhaps she, too, could have been diagnosed if she were still alive.

Interstitial cystitis is a lonely disease and has impacted so much of my life. The invisible nature of the condition makes it especially difficult for others to understand it. Each day, I’m on the front line, fighting against my bladder’s demons. Acidic foods, preservatives, caffeine, cured foods, smoked foods, processed foods, spicy foods, aged cheeses, artificial sweeteners, positional changes, certain medications, stress, and unknown influences tease my bladder daily. Although sweets and luscious desserts entice me, I must avoid temptation lest my bladder violently protests.

Even through the night, I am awakened and constantly on guard. Back and forth I prod to the toilet until I fold from utter exhaustion. My bladder continuously demands my attention like the cries of a wounded soldier. Relentlessly, I surrender to my bladder’s urgent callings.

I eventually formed a support group for others with interstitial cystitis. Through the meetings, I met many people, both men and women, who shared their journey. We are not alone in our struggles with this maddening disease. Those with IC have courageously learned the meaning of patience, empathy, encouragement, and most of all endurance.

Despite sleepless nights and limited social activities, I’ve somehow managed to accept my condition. I’m grateful for my second husband who is very understanding and supportive.

I hope that my deceased Dad is looking down at me; he’d be proud of my accomplishments and happy to know that I’m still around today. Sometimes in the night, though, as I look up to the darkened ceiling, I shout out, “Aunt Rose, Aunt Rose, oh how I wish that you were still alive.” Then, if I’m lucky, I’ll cry myself into a few blessed hours of unimaginable, deep sleep.

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