well, even my husband thinks i'm a pain in the ass

On learning to let others shoulder the burden. (You. You are the burden.)

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

I am a lot of things. I am terribly funny, incredibly anxious, quite directionless (at the moment, at least). I am—I think, I hope, I pray—a good mom, at least when I can be. I’m brave-ish, I’m an A+ communicator. I am an excellent holder of a grudge. I am so selfish. I am so strong, I am…scratch that. I am a selfish and strong and resilient motherfucker. I am, in addition to all the above, a gigantic fucking burden to everyone who loves me, and I am absolutely unable to be convinced otherwise.

It’s not uncommon, I don’t think, for chronically ill people to live with chronic conviction that their presences in their own homes and in their loved ones’ lives is stressful. I remember so clearly so many years ago, after hours of discomfort and hysteria, finally settling in front of a fire my mom spent forever trying to make perfect, curled into blankets she was stressed weren’t sitting just right. I remember finally falling asleep, the tubing coming out of my right lung at long last angled just right so that its accompanying fluid bag could still collect what was draining out of my body. I remember being jerked awake by my mother, who, after taking hours of her day to help me just, like, lie down, realized my oxygen tank couldn’t be so close to the flames!!!!! And I remember thinking everyone in that house probably wished I’d never come home. At least not while I was still in that condition. (Don’t you worry, my sweet, sick babies. We’ll get to the most acute pulmonary hypertension years lmao. All in good time!)

How we got here

More recently, I remember just…watching and crying while my husband spent an hour each night for months prepping my TPN supplies; hooking me up to fluids and nutrition when I couldn’t even sit upright. I felt so sad for me, for what my life had become, but I felt even sadder for him. His life was so stressful, and it was, beyond a shadow of a doubt, entirely my fault. And regardless of his insistence otherwise, the emotional and physical load that is…me is present in most threads of our lives, when I’m acutely ill, when I’m in full remission, and, like most times, when I’m somewhere in between. And while he always is sure to look me in the eyes and assure me he doesn’t resent this—that he would do it again and again, even!—I just don’t know that there’s anything he (or anyone) could ever say to convince me I’m a buoying and energizing and net positive part of their lives.

How we’re doing right now

Given that this has been one of my more prolonged periods of “I need help to do most things all the time” and that the world is *waves vaguely, etc., etc.,* ending, I’m not feeling great about how much time and energy I’m continuing to require of others, especially those who love me the most.

I asked Dr. Michael Dolinger, MD, MBA, about how his patients with overwhelming and persistent disease activity handle this particular stress in their lives. Dr. Dolinger is the Director of Pediatric IBD at NYU Langone’s Hassenfeld Children’s Hospital and is internationally renowned for his “innovative” work in new diagnostic techniques for all his patients, both pediatric and adult. Also, he’s my boyfriend → husband of 15-plus years. Yes, I am his inspiration~*~*~*~. No, we don’t have a podcast. Wait. Should we have a podcast!? Caaaan you hear me loling!

dr. dolinger, then a medical student, prepping a patient (not his) for her rectal stricture dilation procedure circa 2010

Below is a conversation we recently had about how annoying I know it is to have my diseased ass around all the time. Enjoy this intimate look into our marriage for free, as I have not figured out how to best monetize this particular side hustle. Don’t you worry. I will. :) The world’s puffiest interview has been way, way condensed and edited for clarity/privacy, obviously. (Still loling.)

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Are you texting your friends while we're doing this? Hello? Are you ignoring me while we're doing this? Just clearing up my messages.

…Okay. First section is true or false. I collected a list of things that you tell me often; I need you to tell me whether each of these things you continue to tell me is actually true or false. Does that make sense? It makes sense.

Great. One: You're not sick of me. True.

Two: You don't resent me. True.

Three: You're proud of me. True.

Four: You think I'm going to be okay. True.

…Really? Yes.

In what sense? All of the senses. Maybe not mentally, but everything else.

SoOOOOo, how did you do when I took a little life hiatus a few months back? It was really hard.

How so? The hardest part was balancing everything. I wanted to come spend time with you, but had to restrict that because I wanted to be here to keep things normal for Eloise. Wanting to be with you and keep her life normal and then also trying to still work during the first two or three months of it. I couldn't take time off because I was leaving my jobs. There was no time to give up, so it was three things all at once. It was really hard to balance. I really struggled.

I have a very distinct memory of both feeling more of a burden when I came home from the hospital—Wait, wait. The monitor’s inside.

Oh, good, that adds some color to the story. [Ed. note: We only didn't notice for four minutes, it’s fine.] Okay. I remember saying out loud to you often that I felt like more of a burden when I came home from the hospital than when I was actually in it. Was I? Certainly not.

me omw to interview celebrated gastroenterologist michael dolinger this past sunday, 5/11/25, after he failed to kill a fucking wasp in our bedroom that i asked him to please kill

I really felt that to be true. You were never not working or taking care of me, and that care had to be so precise and intense every single time. At least when I was living in the hospital, you weren’t in charge of keeping me alive. No. It was such a relief to have you home. There are bound trade-offs [in how I could spend ‘free’ time], but I would much rather have you home.

Is that something you ever talk about or notice with your patients after an acute medical trauma? That they feel more burdensome to their families after the fact? I think what changed in talking to my patients, from the whole experience, is understanding exactly how hard everything is at home when they're prepping for a routine colonoscopy, or they're prepping for a surgery, or they’re prepping to get childcare coverage for just an appointment, even. Most of the parents have a second child, need to take time off of work. And when they have surgery and don't have a definite timeline of how long they [or their child will be hospitalized], and it could be a week, it could be three weeks, it could be lengthy aftercare at home—it all throws everything into a turmoil, and this gave me a new understanding of that. When you go through such a traumatic experience as a caretaker, you develop a level of empathy for all of the little things you had a hard time understanding before.

We both hoped and talked about how the second surgery would be a pretty neat fix for everything that came before it. Like, we really thought: “It'll be five days in the hospital, we're done after that.” I don't think we were anticipating months’ and months’ worth of all the fucking shit that has happened since. What’s been the most trying part for you as my recovery stretches on and on? Well, you still don't feel well most of the time. And even when you do feel well, all your energy is spent just hanging out with [the child that lives with us]. There’s still not much ability to do even the relatively normal things, like going out to eat feels like a Herculean task still, and nothing like that is guaranteed to be enjoyable, or, you know, go well. I think that's it: the relatively unpredictable nature and how poorly you feel most of the days, even if it's so much better compared to septic shock in the hospital or septic at home. Or obstructed at home with an infection at home…which was better than septic shock near-death in the hospital. So that's the relative where you are. You feel like crap. You look much better. You can pick your own daughter up. You’re expected to just go on doing 42 things in a day like normal. It’s just not been easy.

Do you ever not believe me when I complain about any of the things I'm complaining about? Not anymore.

Not anymore!? That…slowly changed over the course of our relationship. [Redacted conversation about how when I first met him, he simply did understand what “I can’t empty. I’m pooping spaghetti” meant. IYKYK, I guess] Stop. You know “believe” is not the right word.

…OK, but you see how insane that even feels to hear? I know you believe me, but I feel unbelievable. And that’s with a very specific person who has a very specific understanding of what I’m physically experiencing most of the time. Is that ever echoed to you by your patients? Or their parents? That they know something is wrong and they're trying to communicate it, but they feel as though they're not believed, or they feel as though it's burdensome to even try to get people to understand? Yeah. I think I also have become a really good listener to patients. It’s so important. I just let them talk, and I truly believe them. I swear that's the difference. I don't think most physicians have that perspective, and they don't believe a lot of things their patients say, they think they're exaggerating, blah, blah, blah. And I genuinely hold on to every word a patient says now because of your experience.

What would you say to someone who feels like they’re not being listened to, or who is afraid to communicate because they haven’t historically been listened to? Is there someone out there who will listen to them? No.

Cool. Great! It takes a lot of luck to find the right doctor who listens to their patients.

Yeah. You really think I'm okay? I really think you're okay.

We're going to be okay? You're okay now! You're going to be better. We have a beautiful daughter and a beautiful dog. A very happy marriage.

We do. Okay. Anything else in this realm? Anything you've been dying to tell me, but haven't been brave enough to say out loud? I think you could be even more honest with people. [Ed. note: That is stupid and insane. I’m so honest all the time.]

OK, fine. Should we start a podcast then? Like, a smutty doctor-patient thing? Or, like, a radical transparency one? No. Is this done now? Are you done?

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

Reminding myself that I’m deeply, deeply lucky and loved and supported, no matter what an incorrigible/undeniable pain in the ass I am to everyone around me, I guess? Also: lining back up famous psychiatrist interviews for next week, because Dr. Dolinger is great, but mental health management is not his forte. :) I guess I’d also like to spend some time helping people I love find doctors they feel are really, truly, and deeply listening to them. It’s a frustration a lot of my best friends have suffered.

How we’re eating through it

I don’t know if it’s the electrolyte imbalance or the buzzing anxiety, but I cannot cool it with the salt. Every morning, a full blanket layer of the bougiest feta I can find draped across my eggs. Hard cheddar slices, salted further, aligned perfectly atop saltysaltysalty pita chips. Oh, and you remember all the opium I was crying about in the street last week? I’m allergic to it. Anyone looking to buy? I swear on everything I love I’d just use the money to buy more cheese and crackers. (More on all of that below in this week’s new YT ep.)

As always, I am so appreciative of anyone who’s gotten this far. My favorite sickest fucks. <3

See you next week.

Art by Amanda Suarez