The #1 Most Crucial Tip for Leaving Your Diaper at a Frat House

On being just the right amount of honest (with yourself, sure, but mostly with others).

This is Bite Back, a new newsletter from Tess Koman.

The most stunning and composed woman I’ve ever known had an ileostomy. (Do me a favor and clock that “had,” please.) We first connected back in college when she’d just lost her colon and was chilling with a bag for a few months before having her small intestine pulled all the way through, counting the days until she’d be restored to platonic-ideal gorgeous and bag-less again. She had colitis; I had Crohn’s. If I remember correctly, my thing at that time was that I was literally gushing intestinal juice 24/7 through an enterocutaneous fistula where my belly button used to be (it’s hard to keep track—it’s happened a few times). We talked a lot in a very short period about how relieved we were to have found each other, how it was so validating to both be keeping such disgusting secrets but still be presenting as so cute.

I loved her. I loved that she—again, a gorgeous-gorgeous, popular-popular 21-year-old—needed me, that I was the only one on that whole campus who really understood her. Did I mention she was prettier and more popular than I was?

She got healthier and healthier the closer she got to graduation, thank god. I got sicker and sicker as I barreled toward my senior year. I continued to claw at her for validation as my issues got grosser and grosser, knowing with such certainty that with each “oh god, I had to leave a diaper at Chi Psi”-type text, she was done.

She humored me for a while. Long after we both graduated, even! I’m looking at our last texts now, from May 15, 2016. She asked me how I was doing; I sent her 16 (...!) paragraphs in response, detailing the new discovery of Crohn’s in my lungs, a devastating acute pulmonary hypertension diagnosis, and a forthcoming 16th open-abdominal surgery that was desperately needed, but couldn’t quite happen yet because my lungs and heart couldn’t sustain it at that point.

No response.

How we got here

I have been thinking so fucking much about the “worst case scenario” these days. I, a person with Crohn’s disease (have I mentioned??), have met hundreds of other people with Crohn’s disease over the past 25 years. Maybe three of them have had it worse than I have. Otherwise, mostly, I am every Crohn’s passerby’s worst fucking nightmare, a very scary and perma-inflamed red flag. I flame out of support and advocacy groups, either because, if I am totally open and honest in each of those settings, I end up scaring people or I am considered too scary to be an ambassador for our gross-n-noble lil cause.

It took me years to understand that I scared the absolute fucking shit out of that sweet and wonderful college friend. That even if I had been the prettier one, the more social one, the most well-adjusted person she’d ever known, we never would’ve made it. I wanted to be like her (cute and curable) and she did not want to be a thing like me (cute and beyond repair) and it was neither of our faults that my digestive and respiratory tracts decided that was a no-go, but it did and it fucked us. I was her worst case scenario; she was my wildest, most unattainable dream.

you wouldn’t believe what I left where that night (sometime in 2011)

How we’re doing right now

The (1) recent sepsis, (2) months-long hospitalization, (3) short gut syndrome diagnosis, (4) lay-off, and (5) complete inability to mentally move forward from any of it don’t really make me a new-and-improved contender to be your super-chill (but diseased) friend. But the deeper I get into figuring out what this whole newsletter even is, the more I’m realizing I can reach people who…may be scared of me, but can also relate in ways they’re not quite ready to bond over. Over the past eight weeks, I’ve interviewed dozens of chronically ill people. More than half of them, per my transcripts, mentioned in passing that they’ve had a doctor tell them they’ve got the “worst,” “weirdest,” or “most complex” take on [debilitating chronic affliction] that physician had ever seen.

….Fucking yikes, you sick fucks!! No wonder you don’t want to talk to me in, like, a casual, personal way. I have been baffling doctors for decades—why wouldn’t you be terrified? Even though I’m kinda-sorta better now, but it’s, like, tenuous? And especially now that I truly cannot shut the fuck up about the exponential uptick in my recent traumas!? Woof. Duh! Woof.

What we’re (maybe) trying to do about it

My previous renowned-psychiatrist interviewees have all been pointing me to Dr. Sacha McBain for weeks. Whether this is because she is exactly the right person to address all the above or my PTSD has become increasingly annoying is unclear, but!! Dr. McBain is a clinical psychologist at Rush University who’s redefining a lot of the language and research around medical-specific trauma. Everything she threw at me hit like the world’s fluffiest and most enlightening pile of bricks.

We start by breaking down why everyone’s doctors are out here making them feel like untreatable garbage all the time, which, it turns out, is not an uncommon (or ill-intentioned) phenomenon:

[Doctors] have some awareness around the idea that they are not as validating as their patients would want them to be. And so sometimes, without a psychologist’s perspective or training, they say: “Wow, this really is bad.” This, of course, just creates further disconnect in the communication between a patient and a provider when, in the provider’s mind, they're like, “Oh, I just validated how hard this is for this person,” and the person on the other side of that is thinking: “Oh, my God, that's the most horrifying thing I could have heard about what my situation is.” It makes room for your mind to go all sorts of directions when you're already thinking about dealing with chronic illness, progressive illness, and/or an acute injury or illness.

It stands to reason that you’d scurry from an appointment/diagnosis like that into the arms of people who have been there. I tell her I’ve tried, and that I’m trying. I point to [Hot Friend From College] as an example of the double-isolation that kind of search leads to. She immediately points back at an exercise called “the trust star” that falls within the PTSD treatment of Cognitive Processing Therapy (see a trust star example on pages 90-91). When people go through traumatic experiences, she explains, they tend to organize their brains into buckets of people who get it. “They’ll say: ‘If I'm going have this person in my life, they need to understand it all,’ or ‘when they're outside my circle, there's no way they can understand my experience.’”

This applies to, like, everyone dealing with anything intense ever, of course, but people with chronic illnesses living in ableist societies lean haaard into that first category, Dr. McBain finds. “If you're able to engage with somebody who at least has some shared experience, you can feel like, ‘oh, maybe I can move them on further in my trust continuum. When they don't meet that expectation, it can be such a disappointment.”

The “oh my god, you shit yourself constantly too!?” thing? A prime example. “Even with a shared diagnosis, it's such a unique constellation of what's happening in your body, what's happening for you psychologically, and what's happening for you socially.” She suggests getting really frank and practical about what you’re sharing if you want to open up to someone in a big way. “Really work on self-validation and the understanding of your own experience, and knowing that sometimes when people engage in emotionally constraining behaviors or messaging, like, ‘Oohhh, I don't want to hear that, I don't want to go that deep,’ that's about their ability to process emotion, and not about the validation or accuracy of your lived experience.”

TL;DR: Not everybody wants to—or can, really—talk about everything. And when you are forced to leave a diaper in a frat house? You do have the option to read the room about it. Or, like, call your mom and your mom alone.

How we’re eating through it

Truthfully, I’m a bit of a mess here too. Eating continues to be one of the greatest pleasures of my life. I hope you can feel from there how much I mean that. Also, though: I am chafing up against constant weigh-ins and what I’m seeing on the scale. I don’t know if it’s that sugar has slowly started to creep back into my life (about to hop on with my nutritionist—will let you know lol), but something isn’t quite working the way I need it to.

I think I’m trying to tell you I’m eating what feels good whenever I can, which…we all should? Lol? Those peanut butter pretzel nuggets. Strawberries that are getting increasingly larger every week here in rural NJ. Pasteis de nata this past week, which…oh my god. (This week’s ep below, duh.)

Relatedly: We’re coming up on our tenth issue of this Substack. My severance is, as of six days ago, officially up. And while I am so appreciative of and astounded by the growth here…If you watched (or read) any of the above, you’ll have felt my cloying directionless-ness in every last drop. I want to monetize this undertaking, especially, because it’s tough and trying (though, again, to be clear, I love it). And while my original idea for a paid weekly send centered more on tiPs & tRiCkS~* for people like us (see: sickos), I…think it’s smarter I go in hard on food. Any thoughts/feedback on a paid subscribers version dedicated to shooting BTS, food media, and/or curated food undertakings that pair up with the YT drops? I’m open to (some) feedback. :)

Love you, mean it, be well, WHATEVER.

Art by Amanda Suarez