My Interstitial Cystitis Journey: In-between Potty Breaks
Instead of interstitial cystitis (IC) becoming a curse for me it has become a life-changing gift.
I was devastated and angry when first diagnosed in 1983. Then I was relieved to have a name for what plagued my every waking minute and interrupted my sleep. In-between potty breaks I decided to fight rather than give up. I went back to school and got my Master’s degree in Social Work. I opened a holistic private practice and began to counsel among others, “Interstitial Cystitis” patients offering them hope and encouragement. Creative ways to deal with pain emerged. I began to meditate and ended up doing my doctoral dissertation on the positive effects of meditation for those in recovery from alcohol and drugs. Instead of focusing on what I could not eat or do I looked for methods to enhance my palate and expand my physical limitations. Each time a new ICA Update arrived I immediately sat down and read it entirely looking for nuggets of information to add to my repertoire of coping tools. I was not disappointed.
Interstitial showing probable connections with…
Years ago I started support groups as an ICA volunteer in South Carolina and had the privilege to travel to other states to offer assistance to their coordinators. Instead of wallowing in “ain’t it awful,” I looked for how my situation could be used to my advantage. Along the path other conditions surfaced, which I thought originally were related to interstitial cystitis and now research is showing probable connections. These included IBS, allergies, fibromyalgia, vulvodynia, and food intolerances. With each added diagnosis I educated my health practitioners about the development and kept them informed. The result was they now look to me for updated information. They refer patients to me for support.
Interstitial Cystitis Patients
My story does not end there. Last year I went through a divorce, was diagnosed with colon cancer, and a blocked right carotid artery. Two surgeries within seven days and a two-week hospitalization took its toll on my already compromised body. Instead of whining about my situation I used the tools interstitial cystitis had taught me. I wrote articles, research papers, and journaled as the release for my anxiety and fear. I called on my support network of other interstitial cystitis patients to check on me and pray for me. They rallied around me as I had them in their “dark night of the soul.”
Now disabled, I have the time to rest, to write, to read all the research, and to educate patients and health practitioners alike. I am more centered, aware of my body, alert to changes in it, open to new techniques, and hopeful that research will bring us the knowledge of what can be done to lessen our pain and treat this all-encompassing condition. May you breathe deeply and rest in the assurance that you are not alone.