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If You're Chronically Ill, Remember to 'Pause'


I recently purchased a beautiful journal for all of my goals. It’s pink, embossed in gold, with the script “goals” on the front. I added some charm to it, a gold flamingo and jewel embellishment, a constant reminder of just how much I love the sea and would love to live near it. In fact, that has been my prayer since I was a young lady.

I spent some time pre-interstitial cystitis diagnosis living in Southern California. Having been raised in the rural part of Pennsylvania as a child and in the Allegheny Forest as a teen, Southern California was quite the perfect escape. I never tired of heading to the ocean. If my cousins or friends would ask if I wanted to go to the beach, the answer was always, “yes!” I would head to Laguna Beach with beach towel, sunscreen, book, drinks, food, camera and a dream of someday being in the thick of it all, living in a beach house.

Life has a way of slipping by, or catching up on us. Having been diagnosed with interstitial cystitis in my 30s, it hit me during a time when raising my two sons were my biggest priority. I adored them and wanted the best for them. In the midst of it all, I also went through a gut-wrenching divorce.

Anyone who has a sensitive bladder would totally understand the accompanying pain. My emotions always seem to wreak havoc on my embattled bladder. I learned during that experience, to stuff my feelings and put them away deep inside so that I didn’t feel any extra pain. In fact, years later, a very gifted homeopathic doctor read over my chart, looked me in the eye and asked me why I was so sad. Shocked by her question I retorted with the question, “why do you ask?” This began my journey into understanding the body response to anger, sadness, fear and hurt.

No, the pain of my divorce and raising two young sons on my own did not destroy my bladder lining. It has never been in my head. But the link between the negative circumstances of my life did create a whole new series of ways that I have lived my life. I learned to pause. Sometimes for a while. Sometimes for a longer period of time.

I am a social worker. I work full time and love what I do. It isn’t easy for someone at my age, with my diagnosis, to work full time in the capacity of helping fix what the world so desperately needs. But being able to pause at times has helped me understand others and feel a real sense of empathy, understanding and capacity for being present for others. In fact, it has enhanced my life, given me joy and created more meaning in my life.

Having interstitial cystitis has never been easy. I often wish I had more support from family and friends. But I tend to keep it quiet and protect myself along the way.

Depression often accompanies auto immune disorders. Anxiety is strongly related to pelvic pain. The key for my survival has been goal-setting. I have had goals the entire time I raised my sons, placing an emphasis on health and wellness. I have set goals of helping other interstitial cystitis patients, especially the newly diagnosed. And I have learned to face it with a view to acceptance and love. This is my life. I only get to do this once.  So I encourage everyone who faces these big things in life to write, journal, goal set, baby step all the way to the finish line. And while doing so, pause when needed, remember to breathe.

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Thinkstock photo by x4wiz


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