This article is part of Health’s new series, Life Interrupted: Living With an Invisible Illness. Each month, one women will share what it’s like to appear healthy on the outside while navigating daily life with a serious physical or mental health condition.
“How did you know you had ulcerative colitis?” is the question people ask me that makes me the most uncomfortable. An awkward pause usually follows. Does this person really want to know? I think to myself. Because if she did, here’s what I would say:
Abdominal cramping so curl-in-a-ball crippling that it takes the breathing that got me through the labor and deliveries of my three kids to hold in my cries. An urgency to go to the bathroom so sudden that I never leave the house without a panty liner on and an extra pair of underwear concealed in a makeup bag in my purse, just in case I can’t make it in time. And flares so bad that after even the tiniest of meals, I’m on the toilet every 20 minutes with bloody diarrhea making it basically impossible to leave the house at all.
No, my disease makes for pretty unappetizing chitchat over lunch. It all just sounds gross. So I usually answer, “gastro symptoms” and leave it at that.
A bewildering diagnosis
If there were early clues that my digestive system was messed up, they didn’t register with me. It took blood pooled in the toilet and smeared on tissue paper one October evening five years ago when I was not even close to my period to spiral me into freakout mode. I scheduled an appointment with a gastroenterologist the next day and had a colonoscopy within a week.
I remember my post-procedure anesthesia cloud, feeling overwhelming relief that the doctor did not say I had cancer. But once the drugs wore off, my diagnosis slapped me into reality. At 43, I went from a model patient who was pronounced to be in perfect health at every checkup—I’ve never even had a cavity—to the prisoner of a chronic disease that causes my immune system to attack my colon. Because of ulcerative colitis, I’ll alternate between flares, or episodes, of horrific symptoms and then periods of remission for the rest of my life.
As I sat in my Honda outside our local library, three pages into a woman’s devastating memoir about the pain and isolation from living with ulcerative colitis, I was ugly crying. I did not want to be her. My fate suddenly seemed to be veering out of my control.
My official diagnosis is “indeterminate colitis” because the inflammation in my colon presents like Crohn’s disease as well, so the doctors are unsure which form of inflammatory bowel disease (IBD) I have. Most people don’t know the difference between the conditions anyway. For the record, ulcerative colitis affects the large intestine only, while Crohn’s can hit anywhere from the mouth to the anus. Still, I don’t view it as my mission to educate them. If it comes up in conversation—maybe they know someone who has IBD, or they’re pressing me on why I’m such a picky eater—then I’ll confess.
Otherwise, I go out of my way to keep my disease hidden. That’s fairly simple because on the outside, I’m the picture of health. I’ve always been thin with natural muscle tone. People mistook me for a runner, though “couch potato” was often more accurate. Now at 48, I’m finally trying to live up to my reputation. Ironic, yes, that it took getting sick to motivate me to work at being healthy.
My new normal
I choke down four horse pills a night—at a cost of $500 a month—and the gastroenterologist predicts I’ll always need some form of meds. He also says that my diet has little impact on my disease, an assertion I’m not buying. With the guidance of a functional medicine doctor and dietitian, I went through in-depth poop tests (I kid you not, I had to mail a vial of my poop to a lab—talk about humiliating) and found, surprise, surprise, that my gut health was a mess.
To bring the inflammation in my large intestine under control, out went gluten, dairy, starches, and as much sugar (even from fruit) as possible. I remember the first time my husband and I went out with friends after my diet overhaul to cheer on LeBron James; we sat in one of the basketball arena loges, known for ridiculously lavish food spreads. Before I left the house, I stood at my kitchen counter, trying to fill up on a loaded salad and a few handfuls of almonds I was sure would tide me over.
But once we were out, I was tortured by the breaded chicken wings, nachos with cheese, and hot fudge sundae bar—all indulgences I would have dug into without reservation just a few weeks earlier. And everyone around me was doing just that. I sulked, feeling totally deprived with my cup of water and appetizer plate of a few measly carrot sticks. Had I known this diagnosis was coming, I would have reveled in two heaping pieces of my favorite chocolate chip bundt cake one last time.
Resisting temptation is my new normal, especially since my family hasn’t embraced my spartan diet. I’m usually cooking “regular” dinner for them and an altered one for me. I suppose knowing that what I put in my mouth could devastate my insides scares me from straying. It also gives me back a feeling of control, and I believe it keeps my worst symptoms to a minimum, all while I maintain my everything-is-great front.
Making adjustments at work and at home
The only change in me anyone would notice is that I ask waiters for salads without feta cheese and sandwiches minus bread, and I turn down pecan pie and ice cream after holiday dinners with relatives. In private, though, even when my disease is in remission, my day to day is totally altered.
Take my morning routine. In my past life, I started out by unloading the dishwasher; that changed after a couple of mortifying incidents when the urge to go to the bathroom came on so strongly that even sucking in my breath and squeezing my butt cheeks together during the 10 steps to the guest bathroom failed. I now set my alarm 20 minutes earlier, stumbling straight from bed to the bathroom so I can head to work confident (I’m a writer with no coworkers to navigate around) that I’ve given myself plenty of time to take care of business.
The downside of this new routine is that it interferes with another type of business: With night-owl teenagers, my husband and I have taken to fooling around in the mornings. But with my brain reprogrammed to wake up and instantly worry about parking my rear on the potty, getting into the mood for sex at that hour is challenging. I’ve even bailed mid-act, scared that the slightest gas pain would lead to a full-blown crisis.
The anxiety of an invisible illness
That underlying nervousness rules me, even with seemingly innocuous events like going out with friends. I take my pills with dinner, each one requiring big gulps of water to get down, and I’m always waiting for the moment when I can discreetly slip them out of my purse, cup them in my palm, and quickly pop one onto the back of my tongue when no one is looking.
I know it’s my own hangup, and I’ll admit to more. Like getting on the scale obsessively to check during flares if my already underweight frame is dropping additional pounds. Or wiping three extra times to detect the slightest tinge of red. So much about this disease worries me.
During my busy season at work, when I’m skipping meals and workouts and carrying extra stress, will I eventually see the repercussions in the toilet? How bad will the next flare be? Will it happen before we’ve met our deductible so we’re on the hook for the entire several-thousand-dollars cost of a colonoscopy?
Will I end up on another course of steroids, hostage to sleepless nights and layers of undereye concealer until the inflammation settles down? If that treatment is ineffective, will my doctor ratchet up my meds to a more potent regimen? And most terrifying of all: With the genetic component of this disease, have I doomed my children to this same invisible illness?
All of these secrets that I keep from most everyone makes me feel inauthentic, which can be lonely. But I hate pity and relying on others, so I guess if I have to have a chronic disease, one I can hide is a good one for me. If anything, it’s a constant reminder never to assume I know what someone else is going through.
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