The Voices of My Interstitial Cystitis Monster
My palms are clammy. My thoughts race. Electricity crackles in my rib cage rendering my lunges imobile. A voice, I’ll call her Reason, she scorns me, “Suck it up buttercup, you’ve got a job to do.” Reason is telling me I must stay put and work through the discomfort and ever increasing pain.
A hushed whisper whimpers at the back of my mind, “You know exactly how worthless you really are.” I’ll call her Despondency. Despondency is here as an advocate of failure and self loathing. She likes to remind me that my circumstances are my own fault and fills me with guilt. She enforces the belief that I am a burden. I’m embarrassed. I can’t breathe all the while my body betrays me. I’m at war with my physical and mental self more often than not. I’m on the losing side. Despondency and Reason always bring with them a cohort of stress, anxiety, and depression in response to one sensation — chronic pain.
Pain sears through me like a gremlin trying to rip its way through my bladder with razor sharp talons. I curse Frank the Fireman as I’ve so casually nicknamed my interstitial cystitis monster when it flares. Frank’s looking for an exit but taking his time torching through my pelvic floor. My head aches as I gently wrap my arms around my midsection. Sitting at work, I pray the day ends quickly so I can go home and use what self-care knowledge I have to try and alleviate any of the pain — pain being a side effect of Frank’s rage.
“Frank the Fireman is raging today” is about a thousand times easier to say than “I feel tortured as the open wounds in my bladder spasm and lesions grow.” The hardest part of a chronic disease living inside you is the desire to feel understood, the need to communicate and the embarrassing tension that weighs the air thick and heavy between two people when something uncomfortable is the topic of conversation.
You don’t see the agony I feel. The terror that engulfs me every time I put food or drink to my lips. I wait anxiously to see how anything I consume will affect the sores coating my bladder. My sufferings are invisible to you. The battle within my body is unseen, but I exert almost all of my energy managing my chronic disease or hiding the amount of discomfort I experience daily. Some days I’m better at coping than others, and on those other days I pray for relief — at times that’s meant praying for it to end, at times I’ve felt desperate and prayed for death. Please don’t give me your sympathy, I require none. What I want is understanding and acceptance as I am day to day. Accept me in spite of my struggles. I don’t want to be ostracized by this disease you don’t understand.
I have interstitial cystitis. I was diagnosed with IC May of 2015 right after I graduated college. I was told to give up gluten, chocolate, alcohol and caffeine. If I avoided acidic food and learned to manage my stress I’d be able to live with this disease but it would require a lifelong management routine of my disease, there’s no known cure. After over a year of diet alone not resolving my chronic infection like state, further testing showed gut inflammation. These results were met with words like “celiac” and “leaky gut.” This war I’m at with my body is barely in its infancy. I still don’t fully understand what my body needs to heal and be truly healthy. I’m 29 years old and that’s 29 years of damage I’m working through. It’s excruciatingly painful and I’ve never felt more alone.
Some days I’m on top of my self care and I feel closer to ordinary. On occasion life gets too busy and I miss a self-care session or say yes to the wrong food, I end up reeling through days or weeks of agony. I have to fight my way back to find normalcy and routine. My social life plummeted as my days filled with de-stressing techniques, body work for tension relief and other tools necessary to manage my IC.
There are still days I’m terrified I will spend the rest of my life with Frank’s blow torch igniting a fire between my legs. He eagerly invites Reason with her cruelty and Despondency to bring about shame, with him to any party he throws. I have Perseverance fighting by my side. She guides me through obstacles I face with the strength to endure. I will still have to spread open my legs across table after table as I relay my experiences to healer after healer until I am healed. I spend more of my time alone with my pain than I’d like. I will keep researching ways to return any sense of control back to my life. I wanted to give up. I’m grateful my stubborn nature refuses to allow me to quit and Perseverance is my companion on this lengthy painful journey.
For anyone with interstitial cystitis or other pelvic floor dysfunctions, here’s a list of resources I found helpful for starting my journey, researching how to survive this experience and heal myself naturally. I’m still on my journey towards healing but I’m optimistic that I can live fully and thrive in life again. If you’re suffering and you’re feeling utterly lonely, know there are resources and tools to help. Know you aren’t alone. Know that you have yourself, you’re strong and you’re the best advocate for healing you’ll find. Trust yourself.
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