How I Stay in the Moment While Living With Interstitial Cystitis

I am a pain warrior. I have been told by many who know me that I am brave. What do those words mean to me? Both evoke a certain amount of freedom, with the ability to stand up to what continues to try to knock me down.

I have an incurable pelvic pain disorder, interstitial cystitis, or IC. IC affects mostly women with an onset in the 30’s, but men can get it too. It remains unknown why it has grown in prevalence over the years, and the actual cause is still vague and unknown. What is known is that it causes chronic pain, fatigue, depression and a whole host of unpleasantness. Trips to the restroom can make it impossible to hold a job and maintain a healthy lifestyle.

From the moment I lay my head down to sleep until the following night, pain is my constant companion. The only time I am not in pain is when urine is released from the bladder. As soon as it starts to refill, the frequency and urgency starts all over again. It’s a vicious, hard-to-deal-with cycle. But, as I mentioned previously, I am a pain warrior. I live in the present moment and have developed ways and strategies to live an active, healthy life regardless of my condition.

John Glenn once said that every bit of human progress was because of someone’s curiosity. I have always been curious about more topics that could ever be explored in a lifetime. When I was first diagnosed at the young age of 32, I immediately set out to understand my diagnosis and learn all there was to know about it. I gave it a name, a color, leaned into it, accepted it, and reached out to others who had it. I walked the fine line of telling others or keeping this hidden partner secret. I decided to dance with it, embrace it, adding a new dimension and found that sharing it proved to be a better path for me.

But it is my curious nature that set me on a trajectory to living my life with a debilitating hidden illness. I started to explore the world of horse therapy, volunteering to help individuals with disabilities connect with equines. There is so much to learn and understand about the nature of horses as they relate to humans. This knowledge was the path to thinking about something else outside of my pain and daily discomfort. I used to go to the barn just to lean into my schooling horse partner; breathing with her helped me feel the comfort of someone who truly understood me. I highly recommend it.

As a partner to my pain, I added photography and getting out into nature. Spending time walking not only builds stamina and aids sleep, it is an opportunity to connect with the natural world. I consider it the best therapy. When I am walking, my mind is on other things, not just the feelings of hopelessness that come with pain. It’s about the next path, what I might see there or experience next. The benefits are enormous.

In the winter, I explore topics that bring about spring in my mind. I gather cooking books and magazines, books on gardening, seed catalogs. I have a number of adult coloring books, watch music videos, movies that are lighthearted. I connect with friends and sit in coffee shops even when the things I can drink are so limited. I share stories on websites that promote positivity, read moving novels about hiking the Pacific Coast Trail, and dream, dream, dream.

Am I brave? I guess you might say that. I have my moments when bravery escapes me. I shed tears and raise my fists to the sky and cry out at times. I wallow in pity at times and shy away from people and situations that are overwhelming. But still, I do my best to enjoy my life. I encourage others to do the same.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Interstitial Cystitis

Watercolor illustration of a Woman with Long Hair

When My Doctor Suggested I Stop Searching for Answers for My Illness

The vast majority of chronic pain patients will tell you their illness has been a journey, one they expect to be on for the remainder of their lives. Interstitial cystitis patients will tell you their diagnosis was a journey, one that either took years or is still ongoing. The weird thing about sprouting an autoimmune [...]
woman writing in a notebook

To the Person Who Told Me I Would Get Better If I Just Got a Job

I’m pretty honest about the fact that I was diagnosed with interstitial cystitis. I’m honest about it because I don’t want to feed the shame I feel sometimes about being sick and not being able to do the things I want to do. It’s not an excuse, but it helps give people some context about my [...]
woman sitting on bed and hunched over in pain

What Happens When Stress Causes My Interstitial Cystitis to Flare

I have only been learning about interstitial cystitis for a year; however, I have learned a lot about how different foods and activities affect my condition. I am extremely sensitive to food so diet has been difficult, but my body gives very clear signals if a food is no longer useful to me. These flares [...]

When I Dropped the Word 'Cure' From My Vocabulary

When I was diagnosed with interstitial cystitis or painful bladder disorder, I had just completed several years of intensive study that had changed my life and perspective. These studies had taken me around the world and I was shown so much potential for healing and growth. This mindset lead me into a bit of a [...]