1,657 days.
I’ve never cried.
“She’s stoic,” a specialist once told my mom. “She’ll never let you see how she feels.”
She’ll never let anyone see how she feels. She’ll be called cold, accused of not having a personality. No one will understand why.
After all– “It’s only ulcerative colitis.”
You will almost never see anything written about ulcerative colitis that doesn’t mention Crohn’s disease. For better or worse, they go together. When you have ulcerative colitis, “for worse” seems to be pretty accurate.
Many articles that compare the two (as if they must always be compared, to establish some sort of hierarchy) liberally use the words “just” and “only.” “Only affects the colon,” as if that somehow makes a diagnosis of severe pancolitis any more comforting. Here’s the real “only”: “only” seeing blood in the toilet, nothing else. “Only” consuming Saltine crackers and Gatorade. “Only” 60 milligrams of prednisone per day, you can handle that, can’t you?
But it doesn’t matter. You’re fine. Even when you’re not. Because you can “just” get your colon out. That’s fine, right? You don’t need a colon to live. Just try a few things first– handfuls of pills, methotrexate, biologics that have no effect on your disease progression. It doesn’t matter that you’re not getting better. You were never sick enough to begin with.
I met a woman once who told me she’d had ulcerative colitis since she was a child. She started apologizing as she said it– “I know it’s not that bad.” She later admitted that although she’d had it for many years, she knew very little about it other than what doctors had told her at diagnosis. “It’s not as bad as Crohn’s,” they consoled a very sick little girl.
We all have our own stories, of times when we realized we would be perpetually dismissed and cast aside. A doctor once left my appointment to take a phone call. “It’s about my patient with Crohn’s. Be glad you don’t have that,” he said. I waited in the room for 40 minutes before I realized he wasn’t coming back, phone call and appointment long forgotten.
When you have the disease no one cares about, you get used to being treated that way. Doctors will bust out comparisons completely unprompted. Support group attendees will look at you funny, making bitter comments until you realize there’s no support to be had here. You will have to decide– do I fight the realm of public opinion, who haven’t even heard of my disease half the time and brand it minor when they do? Or do I give up and let them think what they want, because no one’s going to understand anyway?
They don’t understand. No one does. “But you shouldn’t be this sick,” they keep saying, doctors and colleagues and neighbors alike. “You only have ulcerative colitis. It can’t be that bad.”
“You’ll be fine,” the doctors say, when you’re less fine than you’ve ever been in your entire life and headed for surgery. “You’ll be cured now.” No explanation on how they’re planning on stopping your immune system from attacking your skin or joints or eyes. No warning on how your body may respond to the intrusion of surgery by screwing with your other organs. Who cares? Go have surgery. You’re “cured” now, whether you feel it or not.
I never had a chance to mourn.
I was diagnosed, but– “at least it isn’t Crohn’s.”
I lost jobs, friends, relationships. “But you can’t really be that sick. Not with UC.”
I spent the better part of my twenties in bed, at the pharmacy, screaming into my fist on the bathroom floor. “So just have surgery. At least you have a cure.”
And I got surgery, which left me with a permanent ileostomy and changed my entire life, but– “What are you so upset about? You’re fine now.”
Please.
Doctors, friends, family.
No stipulations, no comparisons. Don’t tell me it could be worse. Don’t try to downplay the last four years of my life. Allow me my emotions. Just let me mourn.
1,657 days.
I never cried.