Anne Moore works at Tufts University as Program Specialist in Scholar Development. She received her PhD from Tufts’ English Department in 2012, and lives in Arlington with her wife and two kids. She was diagnosed with UC in graduate school, and had her colon removed in 2005. Most days, she can be found writing, watching Buffy, or on her bougie stationary bike.
Like most difficulties, mine began in high school. When I was 16, I started having blood in my stool, which I immediately deemed way to gross to ever speak aloud, or even really admit to myself it was happening. My symptoms worsened over the course of my junior and senior years of high school, but I remained deep in silence and denial. Even when I ended up in my pediatrician’s office after fainting because I was so anemic, it just never occurred to me to tell her about the blood. I’d always been baffled by stories of women who didn’t know they were pregnant until their babies were born, but in retrospect, I get it. Whatever happened in the bathroom, it was happening to someone else, or in some gaping void separated from the rest of my life by a thick cloak of fear and silence.
After I moved away to college, my symptoms vanished and I never thought about them again. In perhaps the greatest of life’s ironies, smoking has been shown to decrease UC symptoms (but read that whole link, because there are lots of negative impact of smoking and it is generally a terrible idea, even for those of us with UC!). Once I was on my own, I smoked like a pig, up to two packs a day. While I had the endless bronchial infections that go with smoking, drinking, and subsisting almost entirely on spanakopita and bacon, my GI system was (relatively) fine. Saying I never thought about my GI symptoms doesn’t even capture it—I’d forgotten them entirely.
I cleaned up my act after college, quitting drinking and going into much-needed therapy. I quit smoking in 2001 and went through some Olivia-Rodrigo-style heartbreak, after which my symptoms returned in earnest. Without the shield of drugs and active mental illness, I couldn’t avoid it this time around, and the memory of my early symptoms came back in an unwelcome wave of shame and terror. This time, though, I told people I cared about what was happening, and got a friend to come with me to my first doctor’s appointment and wait in the lobby while I got scoped and prodded. I was still terrified, but at least I wasn’t alone.
I was misdiagnosed at first, and because I didn’t have insurance at that very first appointment, I was denied care two years later for the cause of a preexisting condition (ugh remember the early oughts?). Honestly, though, that refusal of care was all the excuse I needed to flee Western medicine altogether for acupuncturists and nutritionists who promised they could cure me if I could only control my diet and get my unprocessed anger under control.
This was an incredibly seductive narrative for me: not only did it lift the burden of a lifelong diagnosis from my mind, but encouraged me to believe that if I just worked hard enough, I could get my wayward body under control. I tried a restrictive diet (no sugar, wheat, soy, dairy, or eggs), medicinal tea so bitter it made my spit taste sweet and my kitchen smell like a witch’s lair, and acupuncture to align my stubborn chakras, but I just kept getting sicker.
By 2004, I’d lost 30 pounds and my blood loss had escalated to the point where I was so anemic I kept breaking plates during my house duty of dishes because I was too tired to hold onto them properly. My mother congratulated me on my weight loss and I burst into tears, finally confessing to her the truth of my symptoms. “That’s it,” she replied, all Texan no-nonsense; “I’ve tried to be patient with this snake-oil medicine, but you need to get to a real doctor.”
I got an immediate blood transfusion and put on anti-inflammatories, but it was all too late. A year later, I was too nauseous and exhausted to make it through a day at work and was admitted for an emergency colectomy. Again, my community gathered around me, giving my mom a place to stay while I was hospitalized, bringing 12-step meetings to my room, giving my family a place to stay for a week after I was finally released.
And it’s my community that has carried me through the time since then. I met my wife in between getting my colon removed and getting a J-pouch, while I was started graduate school at Tufts. Between her family and the 12-step community here, I felt carried through my illness, even though I’d just moved to a new city.
This emphasis on community is the most powerful part of IBDU to my mind, and why I’m so excited to be part of this organization. The experience of being a student is defined by community, but that community is so often grounded in our intellectual experience, which doesn’t always leave space for issues that are more connected to our unruly, disobedient bodies. But the truth is that letting people into the truth of my illness made it possible for me to make deeper connections, take greater risks in my life, and get to a place where community is the cornerstone of how I make sense of the world. I know now that my illness offers me an opportunity for vulnerability and real, deep relationships, where I’m unafraid to bring the whole of myself, embarrassing poop stories and all.