“Diaper!” my two-year-old daughter says, pointing at my pink Depends. “That’s right, honey,” I say, forcing a smile, “Mommy wears a diaper sometimes. Just like you.”
I pick her up and sink onto the bed, breathing in her sweet scent as I rock her tiny body. I am so tired that even standing up seems impossible. “It’s okay, it’s okay, it’s okay,” I whisper, trying to convince myself.
It’s not okay. It hasn’t been okay since my daughter was born, pushing me into a major flare of ulcerative colitis that has left me weak and sick — a hollowed-out husk who spends her days on the toilet, retching into a red toddler potty when the pain gets too intense.
At this point, I’m a veteran of ulcerative colitis, a chronic, as-of-yet-incurable disease similar to Crohn’s disease. My symptoms can include everything from stabbing gut pain and bleeding to sore joints, fatigue and “urgency” — otherwise known as pooping my pants.
Anyone #blessed enough to have an inflammatory bowel disease gets to play with a roulette wheel of lifestyle changes and medications — from relatively mild, aspirin-like pills (only nine a day!) to ‘roid rage-inducing steroids and immunosuppressants. I have itty-bitty cameras shoved up my butt as frequently as most people visit the dentist and I ‘get’ to abstain from coffee, alcohol and all sorts of different foods, depending on how I’m doing.
But nothing could have prepared me for the multi-front war my body decided to wage after my daughter was born. IBDs are horrible for men, but women suffer from additional physical volatility whenever our bodies have hormonal shifts. Monthly periods can bring on or decrease symptoms, but pregnancy and post-pregnancy can be the catalyst for intestinal armageddon.
I had plans today. I want to leave the house. We need groceries and fresh air and human contact, and I am getting weird. Or weirder. On the days I do venture out, I look like a possum caught in a street light — equal parts wide-eyed wonder and hissing defence. My world is small. I’m sick and I’m boring and I’m terrified I’ll poop my pants.
It’s not as if the fear is ungrounded. At this point, I’ve lost track of the times I’ve had an accident and staggered home in a sobbing walk of shame. So many times — in the car, out walking and even during a work presentation. Just the week before, I’d forever besmirched a Forever 21 dressing room.
“At this point, I’ve lost track of the times I’ve had an accident and staggered home in a sobbing walk of shame. So many times — in the car, out walking and even during a work presentation.”
I denied my need for diapers until I couldn’t any longer. It took my husband frog-marching me into Walgreens and shooing me from the bulky, nursing-home diapers to silence my protests over the price.
“I think we can afford the better diapers, sweetie,” he said, handing me a pack of underwear-style Depends. “I mean, really,” he said, crossing his arms, “if you’re gonna have to wear diapers, you might as well get the best.”
Though incredibly supportive, my husband has only one request. “Please don’t come to bed wearing those things,” he says, shuddering, on a night I forget. “On the list of mood-killing outfits, that has to take the cake.”
As the frequency in which I wear them increases, I am beginning to obsess about building a better diaper. “This is awful for the environment,” I complain, embarrassed to see the trash filling up with our household’s diapers. “What I need is a rubberised diaper cover to wear over my regular underwear.”
“I could probably sew you one,” my friend Becky suggests, perking up at the idea of such a weird crafting project. “We’ll see,” I say, knowing I’ll never follow through. I don’t want to commit to a lifetime of diapers. I want to stop wearing them.
I close my eyes and try to sleep, but my daughter, like all good toddlers, will not be denied. She bats at my face and demands a story. Eventually, I sit up and convince myself to move. “Do you want to go to the store?” I ask. She nods.
I evaluate the situation. It’s been two hours since I’ve eaten or drank anything, so I may be able to make it. I’m thirsty, but I know ingesting anything would be a mistake. Better to take this window and leave while I can.
We drive to the toy store to buy a present and for ten minutes, it feels like a success. Here we are, having a typical mother-daughter moment playing with toys. How picturesque. How wholesome. How—
—No. Not here. No.
I pick up my daughter and run to the cashier, squeaking a request for the bathroom key as my kid writhes angrily in my arms. We shuffle strangely through the store, pausing and starting in our own stop-action short. I find the bathroom, fumble with the key, and throw myself onto the toilet, grateful to make it. My daughter, meanwhile, stops fussing and examines the real, working, miniature toilet about five feet away from the big one where I now sit.
Looking over at me, she yanks down her own pants and pull-up and hops onto the seat. She perches on the edge for a second, looking very proud of herself, then edges backward just as I yell for her to stop.
In slow motion, I watch her fall into the potty, her legs kicking furiously as she screams and flaps her arms. I try to stand up but I can’t move to help her. She’s in no immediate danger, but I feel horrible watching her flail and cry, her body half inside the toilet, as I sit there, tethered and helpless.
Eventually, I am able to get up and help her out, holding her shirt under the hand dryer while my body pulses with spent adrenaline. Exhausted, I escort her to the front of the store, stopping every few feet to ask her to put something down.
During our slow march, I look around at the other parents. On the surface, they look fine. Some frayed edges, maybe. The inkling of wrinkles around the eyes, hair unsculpted, bodies a little soft. But fine.
I look basically fine, too, like any other mom in the store. You can’t tell I’m sick by looking at me. But I don’t exactly look healthy, either. I now weigh what I did in 7th grade, and my gaunt, pale face makes me look older. It’s strange being this thin. People assume I’m athletic when the only running I do is to the toilet.
“So many of us are backpacking invisible burdens. We don’t get T-shirts that say, 'Please be nice, I am barely hanging on.'”
Stranger still, I draw appreciative glances from men seemingly too enthralled by my body to notice the haunted look in my eyes. I want to scream, “I’m wearing a diaper under this skirt!” but in the land of aspirational “heroin chic,” “incontinence chic” can’t be too far behind.
Ahead of us, another toddler wreaks havoc on a display. His mom gives me a look like, “Kids. Sheesh,” and I meet her eyes with a smile. I wonder what it would be like to just worry about raising your kid and all the joys and annoyances that come with. Instead, I worry about where the next bathroom is and how long I can stand without collapsing. It doesn’t seem fair.
But what do I know of fair? I don’t know what she or any other mom is going through. They could be agonizing over money or dealing with divorce. They might be day-drinking away the stress or struggling with their child’s special needs. So many of us are backpacking invisible burdens. We don’t get T-shirts that say, “Please be nice, I am barely hanging on.”
I finally make it outside and use my last bit of strength to wrestle my daughter into her car seat. I collapse onto my own seat and lay my head down on the steering wheel, pressing my cheek against the cool plastic. I don’t know whether to laugh or sob or scream and smash things. But I do know I have to keep going. What other choice do I have? There is no “off” button for ulcerative colitis or parenting. I don’t get to just stop and say, “This has been fun and all, but I’m done now.”
So I pull my head up, turn to pat my daughter’s little leg and slowly, steadily make my way home.
This article first appeared on HuffPost US Personal.