How we see the world shapes who we choose to be — and sharing compelling experiences can frame the way we treat each other, for the better. This is a powerful perspective.
Dean Martin once said, “I feel sorry for people who don’t drink. When they wake up in the morning, that’s as good as they’re going to feel all day.”
The minutes or hours before I eat or drink anything each morning are as good as I’m going to feel each day. But it’s not due to abstinence — I enjoy a delicious glass of wine.
IC is a painful, chronic bladder inflammation that causes frequent urination, urgency, pain, pressure, and immense cost. In my case, it causes pelvic floor dysfunction severe enough to necessitate Botox injections every three months.
My lowest pain level is when I first wake up, before I’ve had anything to eat or drink that might irritate my incredibly sensitive bladder.
If I eat a spice, enjoy something mildly acidic, or have a coffee or cocktail, my IC kicks up and feels like I have a livid hedgehog somersaulting in my bladder.
Still, I’ve decided I’m done losing the intimacy shared through food, the creativity of new culinary endeavors, or just my own hedonistic desire to taste and experience everything I can.
Somewhere, my urogynecologist is cringing because she knows what I’m about to tell you: I don’t adhere to the diet.
The IC diet is a one of elimination, meaning you essentially dial your food intake down to three ingredients and try to tolerate bland, dull food to keep your symptoms low. The elimination part comes in when you welcome a fourth ingredient.
Say you’re only eating bread, bananas, and apples — with nothing on them. You might give butter a try and see how you feel. If that butter amps up symptoms, try a different one.
Then you must decide whether to accept a baseline of pain with a diet that includes butter, of all the building-block ingredients, or eschew it for a lifetime of lower (but not nonexistent) pain and butterless rolls.
I spent much of my time initially thinking about how ketchup is acidic and chocolate is aggravating while picking at piles of bare chicken breast and brown rice. Then I realized that, to me, breaking bread together is essential for bonding with people.
Accepting more pain to revel in new culinary delights
I need to experience, experiment, and taste. My most attuned sense (second to chronic pain, which becomes a sort of sixth sense after you’ve spent enough years suffering) has always been taste.
I can manage pain. Withering in a bland, colorless, tasteless, revel-free lifetime, I cannot.
Quality of life is an imprecise metric clinicians use, and patients have to define it for themselves. Part of self-advocacy as a patient with a chronic, long-term disorder is developing the assertiveness to claim the life you want.
Clinicians frown at my coffee intake and love of tasting menus. But I find it ableist that a common assumption is people with illnesses should be good, compliant patients willing to self-sacrifice to validate the legitimacy of their pain.
When I got my diagnosis at 16, I considered the life before me and decided I could deal with more pain than I felt on a restrictive diet. A couple of years later, I took my low-symptom self to Dublin and London for semesters abroad. I ate everything, and most nights were capped off with healthy, shame-free pints. So what if I went to the restroom five times more than my companions?
The gap between the doctor-ordered lifestyle limitations and my desire to learn the world through taste was mentally easy for me to jump across.
So, I fearlessly indulge in my friend’s homemade curry. I developed a tea obsession that led to bonding with one of my closest friends. On Sundays, my partner and I cook a new recipe, generally something that takes up some time and little more careful mincing and searing.
These and many other culinary adventures irritate my leaky bladder wall, which reacts to cayenne pepper like a slug getting salted.
Yet these moments and the memories they’ve given me are crucial to the quality of life I have.
If the difference is bladder pain rated 4 versus 6, I’d so much rather taste the spiced chocolate chip cookies my colleague made than abstain.
At a certain point, pain is pain, and its number score becomes less tempting to scrutinize.
People familiar with the IC diet will protest that drinking alcohol is like, well, pouring alcohol into an open wound. While I don’t disagree, I think assessing the value of the drink is everything. Faced with multiple study abroad opportunities where social bonding almost exclusively happened in Dublin and London pubs, I made the choice to prioritize memorable experiences over base, crude pain.
There’s still consideration, planning, and balance
I stopped the elimination diet nonsense about a decade ago. My one concession today is to avoid spicy dishes after 8 p.m. so sleep isn’t a nocturnal battle between paprika and the milk I’ll have to chug to offset it.
I’m still armed with helpmates like Prelief, an acid reducer in my coffee, and baking soda-water rescue drinks, I resolved to just do my best with this pain baseline. I’m strategic — I don’t tempt the tapas gods the night before a flight — but I’ll never feel more fulfilled because I was a model patient complying with a diet predicated on emptiness.
I start my mornings now on my roof with a big Chemex full of coffee from my favorite shop in the Berkshires. I think about the friends I was with when I discovered the brew, and my life is fuller for the shared experience of exquisite pour-over in a picturesque place.
While an easy decision to accept more pain for wholehearted living, it wasn’t an effortless transition. Resisting pain and managing it well enough to avoid succumbing to any number of poor coping mechanisms takes sincere commitment.
I’ve angry-cried with the cook’s form of writer’s block in front of my fridge more times than I’ll admit. But I’ve found those quiet moments of frustration have faded as I need more room for planning and remembering moments with friends and family.
By making my life a treasure hunt for flavors — whether food, people, or stories — I’ve defied an illness that could’ve stolen my joy.
Chaya is a reluctant bladder owner residing in Cambridge with her partner and their one-eyed, polydactyl cat. Catch her ordering just one more small plate and cooking with prodigious amounts of garlic when she’s not writing about public health and chronic illness.