Blue neon lights colored more than two hundred dancers on a stage above thousands of clubbers on the ground floor of Discovery, a multi-level nightclub in Darwin, Australia. Krystal Miller used to frequent—and win—Tits-Out-Tuesday flashing contests here. But on this particular night, a Friday, Miller was dancing with friends to celebrate her 24th birthday.
Miller calls Crohn’s disease an invisible illness.
She remembers how she felt as she got ready with her girlfriends, listening to music and drinking wine. “I always loved my curves,” Miller said. That night, she wore a form-fitting, low-cut dress. “I felt beautiful and sexy even though I had just been dumped.”
Miller’s ex-boyfriend hadn’t liked that she had an ileostomy bag, a waste-collecting bag set in an abdominal opening connected to the bowels. She had it placed two years earlier because a Crohn’s disease diagnosis meant that part of her small and large intestines and anus had to be surgically removed. So even though she felt beautiful in her dress, she was ashamed about what was underneath. She remembers “feeling pathetic” on the inside.
That night at the club, Miller met who she thought was the hottest guy there. He wasn’t the type she would usually go for—a “ripped pretty boy [who] could’ve been a model”—but her friends were envious and she was having fun. His name was Caleb. After locking eyes with Miller, he asked his friend to convince her to talk with him at the bar. Conversation evolved to dirty dancing—“I knew what he was packing,” Miller said.
At the end of the night, Caleb asked to take her home. She automatically replied, “No,” nervous to explain why. “Look, I have a bag,” she eventually told him. “I had bowel surgery. I can’t.”
Miller calls Crohn’s disease an invisible illness, a condition whose burdens are almost entirely internal. It is an inflammatory bowel disease that affects the lining of the digestive tract. But with symptoms like abdominal pain, bloating, and weight loss due to malabsorption, the disease also affects quality of life. Coping with body-altering surgeries and associated illnesses, like depression, takes a toll on self-confidence and personal relationships.
I know this because I have lived with the same disease for six years and have experienced the invisible struggle Miller describes: I have attended birthday parties with pulsating pain in my abdomen and a smile on my face; I have cordially taken unassuming compliments about my weight loss, knowing inside that I was only absorbing a third of the nutrients from my food; and, like Miller, I have danced on a club stage while feeling broken on the inside, the intestinal suture from a surgery throbbing at my insides, though I never showed others how sick I felt. Miller considers herself an exceptional actress, and so do I. People with hidden illnesses are some of the strongest people, Miller told me when I met her over Skype in May. We are conditioned to keep pain to ourselves, showing only what we want others to see.
She wants others with Crohn’s disease to feel okay about the possibility of life with a bag, especially women.
At 26, with one abdominal surgery—and many lovers—behind me, I had also experienced toxic, unsupportive relationships that made me question my worth to another person. The disease tested my partners’ emotional fortitude, as well as my own. I learned to create better boundaries and navigate pain, and as I grew through my journey, outer strength morphed into inner strength. Still, I often experienced the trauma alone—until I discovered Miller’s body-positive Facebook page, Bag Lady Mama. I saw my story reflected there.
Miller posts semi-nude photos of herself to broaden awareness about invisible illnesses and to empower women struggling with the resulting emotional tolls, particularly those arising from negative self-image. She launched the page in January and now has more than 26,000 followers.
Almost 10 years post-surgery, Miller says she experiences normal, everyday insecurities, but she is confident in her body—and unapologetic about it. She also shares anecdotes about life with a bag—the time she gave birth to her son or the time that she ate too much chocolate and accidentally pulled out her bag too soon. Underwear-clad and wickedly funny, Miller chronicles her continuing evolution around body image, romantic relationships, and pain—bag, tattoos, and belly out. “I love to shock people,” she laughs.
No matter how silly or arresting, her posts speak to common struggles most women face in the search for self-acceptance. She wants others with Crohn’s disease to feel OK about the possibility of life with a bag, especially women, who often experience dread. In the end, having a bag is not the worst thing that can happen.
Miller’s journey toward body confidence didn’t exactly happen overnight, but the experience that sparked it did.
Krystal Miller the “Bag Lady Mama.”
Photo by Kristy Lee Photography for her “Be Inspired Project.”
Remember Caleb? Miller has never forgotten the response she heard when she revealed she had a bag: “I already know,” he said. “We’ve been dancing all night. I put two and two together.”
Miller felt shocked. “I didn’t realize he knew what I was packing too!” she told me.
Caleb persisted: “So, wanna come home?” And Miller finally said, “Let’s go!”
It was the last thing she expected to happen. She never thought of herself as someone who’d have a one-night stand, but then she never thought she’d meet a stranger who would accept her with all of her “medical drama,” she said.
I knew what she meant. Last year, fresh on the heels of my own breakup, I took a two-day trip to Chicago for a job interview. At a cafe on my first day, I was invited out by my lunch server, Charles. Going home with him that night—after some hesitation—was transformative in ways I never expected. I felt more understood by a stranger than some of my closest friends and family. Charles, a stranger, had the luxury of meeting me without all the gunk and drama. He sensed my strength and vulnerability in the first moments he saw me—he explained that to me as many times as I brushed him off. I remember we had locked eyes many times, but my mask was still on. He finally settled to say, “You don’t know how beautiful you are.”
Miller remembers feeling shy and nervous that night as she undressed, but Caleb kept pushing her hand away so that she couldn’t cover herself or the bag. “He even kissed my tummy, which I thought was sweet,” she said.
While some people remember their first kiss on the lips, Miller and I remember our first kisses on our tummies—scars bare.
As I left Chicago after my night with Charles, I didn’t realize that, separated by years and miles, another woman who shared my disease would also give voice to my story. It was only after I had talked to her that I was ready to fully accept the affection Charles had shown me that night.
She described to me the poiesis of human relationships this way: “All of our experiences define who we are. Every individual touches another person. We mold each other. [That night] had a tremendous impact. It shaped me. I took that and made it mine.”