If You Can’t Be First

When I first started running in elementary school, I ran a bit like an ostrich: neck out, arms flailing. My legs were incredibly adept at kicking my butt; let's call that a sign of things to come? I laugh now, but I really took it in stride then. I had a mantra: If you can't be first, be last.

My friend is sick. She has been for a few months now, though we've only recently started talking about it. She has pain that leaves her crunched over her legs, nausea that sours her food, and a troubling relationship with toilets. Familiar, right? But here's the catch: she doesn't have IBD.

When I was diagnosed with IBD in 2008, I remember the snarky comments I'd come across when a well-meaning interneter would confuse the acronyms IBS and IBD. It happens all the time, and to most of the poop-typical world, they're just one big lump of poop problems, right? Honestly, I would get frustrated, too. In some cases, I needed others to not get confused: for example, when I needed to be sure an authority figure clearly understood my condition so I could receive my right accommodations. In others, I just wanted clarity: in the age of Google, if someone is to look up the bad and good about the thing I have, I want them to have it by the right name.

I usually grimace and move on when I see a misplaced IBS online, but I've been exposed to a certain elitism within the IBD community online: given all the horrible complications of IBD, some would take it as an insult to see the D lost to an S.

Part of me gets it. We know the hurt IBD can do at its most terrible. When you are suffering due to intestinal damage that may not be able to be repaired, and then someone, intentionally or innocently, confuses your condition with one that wouldn't leave you as scarred and bleeding, confusing emotions can emerge. And, I will not frame myself as the noble hero here: I too have groaned and rolled my eyes when I've seen IBS written where IBD should be. There are enough myths and stereotypes about IBD floating around on the web without tacking on the myths and stereotypes of other intestinal diseases.

But let's stop and back up to my friend. And keep going, even more back, let's talk about me. It is okay to correct a mistake, but I have become aware this year of how little empathy it is easy to have when we do it.

I have been in pain this year. At times, among the worst I've ever been in. In the fall, I needed to go to the emergency department for relief, and I would have again in the winter if I thought it could help. I've cried, I've pushed through doctor fatigue, and I've tried probiotic after dietary change after med. Thirteen months later, I don't have a name for what this year has been. I know my intestines don't move the way they used to. I know I have gas that builds up in my small intestine, causing pain that can then push nausea. I know it's been new, and I know it's been scary. But perhaps newest and scariest of all, we may not know what it is, but we know it is not my IBD. It is a strange contrast of feelings to be at once thankful for endoscopic remission and yet disappointed as easy answers elude us.

If I frame it as I just have, you'd think I've had a terrible year. But I've had a wonderful year!! I completed my second year of medical school with good marks, enjoyed two distant vacations with my family, rocked my end-of-year exam, am running more than nearly ever (less like an ostrich I hope?), and am loving being a third-year medical student helping to care for real people. You know this, we adapt, we adjust, we go on, we become better even if our intestines do not.

In IBD, there is no first or last. We can't compare, we know this. I have close friends with all different presentations of IBD, and the first rule of the PAC and Camp Oasis has always been this: no one's experience is more or less valid than another. I learned this young, and without it, I couldn't have found my place here.

I'm learning it again this year in a whole new way. For one thing, pain beyond IBD can hurt all the same. I have felt sorry for all the times I have mentally assumed less of others' suffering because "it's just IBS." Let's get rid of that "just" modifier from our heads, okay? For another, I'm realizing that empathy leads to more common ground than drawing lines in the sand. As I imagined my friends' pain, my own felt minimal. Her reply: I'm sure what you've gone through is soooo much worse. Maybe it is, maybe it isn't. I don't care to compare. She, too, adapts, adjusts, goes on, conquers the world.

Let's be kind to each other. Let's try to understand each other. Let's live with more empathy than some of the internet has had before us.

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