But I’m Already Sick: Thoughts on Cancer Privilege and Bloody Poop

“I’ve been sick for the past nine years!” This phrase keeps running through my mind and I want to shout it: at the doctors performing their surgeries and running their tests, at the Universe Appeals Court that really should be set up to create a more fair and just world, and even at all the amazing friends who are showing up for me and asking what I need.

As someone who’s been chronically ill for a long time (I was diagnosed with ulcerative colitis when I was 20), I’m watching with fascination and even some cringe-worthy resentment as the cancer machine kicks into gear. People are volunteering to accompany me to the doctor, to take late-night phone calls, and to help manage the side effects of chemo.

My GI doctor’s fancy screen showing where my colon is inflamed (red) and where I once had a polyp (the purple dot)

And that’s great. That’s really, really wonderful how cancer is bringing out the best in my support system. But part of me — namely the part that consists of my body, mind, and soul, all of which have been dealing with chronic illness for almost a decade — is envious of this response.

I’ll be honest. I almost gave up on writing this post because it sounds like I’m whining about cancer privilege, and that’s just absurd.

But it’s also interesting, so I want to take a closer look at what’s going on here. Consider what happens when I tell someone about my cancer diagnosis:

Cancer is a scary word, so the first thing that happens is that the listener gets scared for me. He’s sympathetic. He has some knowledge of what treatment might entail (chemo, surgery, radiation) and wants to know which options apply to me. He also wants details: am I feeling sick, what symptom made me go to the doctor in the first place, how will the oncologist determine the stage; the list goes on. Then he says to let him know if there’s anything he can do. Cancer makes people amazing.

Now take a look at what happens when I tell someone I have ulcerative colitis:

He gives me a look that’s balanced between quizzical and concerned. “What is that?”
I laugh a little and shrug to put him at ease. I know the answer isn’t pretty. “It’s basically bleeding ulcers along the large intestine.”
We both pause to give him time to process this.
“So, like…” He looks afraid at this point, and I sense he wants out of the conversation. Often he asks, “So there’s blood when you pee?”
“There’s blood when I shit.” I’ve actually learned to say this in a way that sounds tough and matter-of-fact, like it’s something I got over a long time ago. New friend, love interest, someone’s overly inquisitive uncle…it is just so easy for me to talk about my bloody poop.
This is almost always the cue for a change of subject. It’s time to move on to elves or soccer, anything that doesn’t involve abnormal bowel movements.

Pretty different from the cancer convo, right? And I get why. Cancer is much more common, so people actually know what it is. It has a higher mortality rate, and someone who might die is more sympathetic than someone who spends a lot of time exhausted and in gastrointestinal distress. Cancer is also less disgusting to talk about.

The thing is though, I do want to talk about my bloody poop! I want people to ask about what it’s like to have this disease. What I’d love to say to the scores of people who’ve shied away from discussing ulcerative colitis with me, is that it’s an incurable disease that cycles through periods of remission followed by flare-ups. That there are a handful of people in my life who every year or so get a telephone call from me where I tell them that I am once again struggling with a flare-up, and that it’s exhausting and discouraging to keep getting knocked down by this disease. That aside from this handful of people, almost no one in my life even knows when a flareup happens.

I’m not alone in having a shitty (yup, pun intended) disease that’s hard to talk about. There’s a huge community of chronically ill people who look healthy, whose diseases don’t trigger instant sympathy and understanding, and whose suffering isn’t a readily accepted conversation topic.

Chances are good that a year from now, I’ll be cured of Hodgkin’s lymphoma. But I’ll still be sick. There’s currently no cure for ulcerative colitis (short of removing the colon), so I’ll likely be living with it for the rest of my life.

As the years pass, I hope some of the people who are stepping up to support me through cancer will continue to ask how I’m feeling. Maybe they’ll let me know if they can take me home after my annual colonoscopy. And just maybe, they’ll consider letting me talk about my bloody poop.

Like what you read? You can check out more at my website, ericajschecter.com