Most of the traffic I have received on this blog has been IC related. For many reasons, I have not posted about my health journey the last 6 years since I was diagnosed with IC, but the most prolific reason for my silence is pride. IC is a disease affecting the most vulnerable parts of the human body, and quite honestly, I wasn’t in a rush to put that aspect of my life on display. I mean, if my chronic health issue was that my big toe hurt, I wouldn’t mind announcing that to the world. Ha! But since IC involves the bladder and body parts that are not discussed in mixed company at dinner parties, it requires humility and vulnerability and courage to speak openly about the topic.
My husband is a pastor of a church in a smaller community and ministry is a fishbowl of it’s own. We are public community figures, and it’s hard enough to maintain our privacy as it is sometimes. With declarations of diagnoses, well intentioned people ask probing questions that are uncomfortable and that push the boundaries of what is appropriate. They may make assumptions about my ability or my husband’s ability to do his job, because a person with a health issue is as liability not an asset. And lastly, it is my job and calling as a wife, mom, daughter, pastor’s wife, and school employee to help and serve others, and I did not ever want to call attention to the fact that I may be the one in need.
After pride, fear of toxicity held me back. I was not an emotionally healthy individual for the first few years of my disease, and therefore, the words and attitudes that I possessed were negative and pessimistic. Unless I could make a positive impact on the IC world, I did not want to speak in to it. I feared that my feedback would cause a fellow IC’er to become more depressed and discouraged as my hopelessness was evident in all I said and did. It took me this long in my health journey to regain a positive outlook and an emotionally stable perspective.
So after 6 years, I think I’m ready (or at least willing) to share my IC story. I have found my voice, and I’m ready to use it for good. I realize that part of the discouragement I felt at the onset of the disease was the isolation that lingered. I wished so desperately that I had someone to look up to, a trailblazer that I could follow for encouragement and information. But so many people with IC are scared or shamed in to silence, and the idea of community that I needed was nowhere to be found. So I want to be for others that which I did not have, but desperately desired. I want to declare to the IC world that, yes, I have a chronic pain condition, BUT a satisfying and purposeful life is still possible. So stay tuned, and meanwhile, stay hopeful.
***If you have IC or another chronic pain condition, leave feedback in the comments below on topics that you’d benefit from being discussed on here.