A week before Christmas last year, I was diagnosed with interstitial cystitis, otherwise known as IC. After dealing with disabling pain for six years, I spent Christmas Eve and Christmas morning nauseous, on pain killers and realizing the diagnosis was just the beginning of another chapter dealing with chronic pain. And, despite months of living with this new reality, I still have to remind myself that I’m stronger than I give myself credit for — and you absolutely are too.
Chronic pain is more than just a physical battle. The physical tolls can also influence an individual’s mental and emotional health. Ann-Marie D’arcy-Sharpe wrote an amazing piece for Pathways, expanding on the different facets of chronic pain. She talks about how your sense of self and confidence can be warped when your body experiences intense pain. It’s common to feel frustrated with your body.
She cites a study published in the National Library of Medicine that showed the prevalence of mental illness “ranges from 33% to 46% among individuals with chronic pain conditions.” She also explains how long-term chronic pain actually changes the structure of the brain, which can cause problems with memory, decision-making and emotional regulation.
Personally, I’ve experienced a range of these emotions, but the most prominent one — the one that is constantly with me — is the mourning for my body. A blog on Medium from Hannah Chase explains it beautifully: “mourning the loss of your healthy body is not dissimilar to the process of mourning a loved one, except you constantly have people (doctors, friends, medical ads) telling you you can get better.” It’s a vicious cycle with no promise of ending.
And then comes the “you don’t look sick” comments, coming from either people around you or yourself. Chronic pain is usually internal pain, meaning you might look fine while you’re enduring pain. It’s hard to trust yourself when nothing looks wrong. When someone breaks their foot, everyone can see the swollen, purple appendage. Individuals with chronic pain often lack visible injuries to indicate they’re in pain. All they can do is explain it. Having to explain pain, especially when it gets disabling, is tiring, frustrating and ultimately feels entirely futile.
This factor alone makes it so much harder to trust yourself. I’ve been in the emergency room hoping the tests the doctors performed prove that something else is wrong, just so I could prove I'm not faking it. Sometimes I feel maybe I’m exaggerating my pain, or maybe I’m just super tired, or maybe my pain tolerance is low today, or maybe, or maybe, or maybe.
And six years later, five months since my official diagnosis, I still get embarrassed to talk about my symptoms. They all revolve around my reproductive system, which I felt, as a woman, was the one part of myself that should be 100% effective. I felt like my body let me down and, in turn, I was letting everyone around me down.
I often feel guilty for feeling bad about my diagnosis. Out of ovarian cancer, endometriosis, polycystic ovary syndrome and uterine fibroid, I should feel lucky that it was just interstitial cystitis. But, it’s not just interstitial cystitis. It’s monthly appointments to the OB-GYN, frantic drives to the ER and countless missed days of school and work. It is a chronic pain condition. It can be disabling and minimizing IC in comparison to those other conditions does nothing but dismiss my experience.
If you know someone who is managing chronic pain, please ask what you can do. Remember that recommendations for a cure or treatment often come from good intentions, but ultimately might be discouraging — especially if that person has already tried it with no results. Just asking what they need in a support system is a great first step.
For anyone who’s managing chronic pain, please know this: you’re not weak; you’re not overdramatic; you’re not lazy; and you absolutely can pull through. Chronic pain is a thief. It robs you of your physical health, self-esteem, future plans and daily routines. And, yet, you’re still here! At the end of the day, it’s about survival. Be proud of yourself for surviving.