the most selfish person you know just made a great point

On managing your neediness. (And how *you* should manage mine!)

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

On a recent interview for a job I’m going to assume I did not get, the interviewer asked me: “What do you not want to be known as? Is there something you’d not want to be pigeonholed for?” I’d just fumbled my way through his prior and opposite question (“Describe your brand in three words” or something), but had an answer reeeal quick for this one. “I don’t just want to be ‘Chronic Illness Gal.’” I was told it was a good and interesting answer; we moved on.

…Tell me why I immediately went on to launch a chronic illness newsletter after I got laid off a few months back, as well as a new YouTube series centered on my latest acute medical trauma recovery. Tell me why I positively can not shut the fuck up about all my sick person debauchery these days, bringing it into every conversation, every plan, every…everything. Tell me why I would ever say such a thing—like a motherfucking involuntary reflex, too—when I have always been so vocal about My Shit in every single professional and personal relationship I’ve ever had. Make! It! Make! Sense!

How we got here

For as long as I can remember, I have been a selfish and demanding person. Sure, I can stand here and attempt to make justifications for this because of my 25-year-illness (and, boy, will I try), but the fact remains that one of my core childhood memories pre-diagnosis is:

(1) my mother handing me a Twizzler,
(2) her telling me to share,
(3) me splitting it in half,
(4) measuring the two halves up against each other, and
(5) very deliberately giving my brother the smaller of the two, all while knowing my parents had clocked the exchange.

Still, I have looong leaned on the fact that I need more than other people do most of the time, and use that as a way to rationalize asking for favors, venting sessions, absences, and more.

My selfishness, my disease, and, subsequently, my defensiveness, are inextricable and brutal; swirling them all together in my twisty lil brain is my favorite form of self-immolating. There is nothing I can’t connect to being sick (a job hunt included, I guess!), and I have never been shy about talking about that and talking about that and talkiiiiiinggggg about that, oh my GOD. Some recent examples:

the actual most selfish member of my family, if we’re being totally honest

…I am so excited to see you! Could we actually possibly *not* do a vegan restaurant? Most vegetables get stuck in my intestines and then ruin my entire fucking life, and I’m fairly certain you will eat eggs and butter no questions asked. I really am so sorry to ask. It’s just…the vegetables, you know? I get so fucking anxious after all the obstructions and the vegetables. It’s fine, right? You’re good? I’m so sorry, I know. I know! I’m a selfish piece of shit. I’m the worst!! Thank you so much. You get it, right? I know.

…I missed a deadline? (Again, irrelevant atm, but deadlines are usually a big part of my life.) I had to wait for that doctor, you know I had to wait for that doctor. I’ve made that mistake before and it landed me back in the hospital and I can’t go back to the hospital. Also, I told you I might have to wait for that doctor and provided four contingency plans just in case, plus I was reachable the whole time, so you know I did everything I could, right? You know that? I know it was selfish, and I’m working on that, but also, you did know, right?

…I ruined a long-standing, deeply beloved friendship? I was sick. I was overwhelmed. I am a bad person. I am such a bad person. But I am also sick and so, so, so overwhelmed. You know that, right? I didn’t mean to. I’m so sorry. I just…I am so sick and so overwhelmed and I could not and can not see past my own fucking shit.

Do you want a coworker, a friend, or even an acquaintance like that? One who simply can’t just…exist and be chill and normal? I sure don’t, but dammit if I won’t sit here and expect you to regardless.

Woof.

How we’re doing right now

I’ve never understood people who declare proudly their afflictions or diseases never have and/or never will define them. How? Who? HOW? Like, amazing, but…how??? Are you not anxious to do every single thing? Are you not terrified you’ll have to justify what you can’t? Are you really not preparing the silly, goofy, self-deprecating preamble that allows people to understand why you are such a mess re: every single thing? Really? If yes, a-m-a-z-i-n-g. If no…that’s you = disease, disease = you by definition, babe. And that’s fine! Come over here and we can be coworkers/friends who talk about nothing besides how paralyzed we are. I will validate you so hard you’ll want to inject it into your veins. But after that, you *are* going to be hanging with a self-absorbed broken record, my dude. You’re hanging with someone who’s knee-deep in stipulations. I’m so sorry. I feel so selfish. But it’s true.

All that to say: Despite the constant and crushing awareness that, yeah, I just made it through a really scary and all-encompassing thing that altered the trajectory of my health and life forever, I cannot just go about living my lil life and talking about things normal people talk about. I want to so very much. But I can’t. Not even when my livelihood depends on it.

still wants to hang with me, somehow

What we’re (maybe) trying to do right now

It is exhausting to want to move on but be unable to, especially when “moving on” means…changing what you believe to be the common denominator across your entire personality? And your behaviors? And your basic needs? I am so intent on proving to others that I have made strides but am so confident I haven’t—and that I won’t. At least, not until something huge changes in my egotistical-as-fuck alchemy.

I’ve been thinking about what Dr. Laurie Keefer told me about creating normalcy habits all the way back in ep. one of this undertaking. She explained that “normal” is hard to define to begin with when you have a chronic illness. Later on in my notes, I find that she discusses redefining a “new normal” after a particularly traumatic incident. She explains that re-establishing a new baseline—even if it kinda-sorta feels like the old one—can be very helpful, as is bucketing your behaviors. “Further,” she said, “‘normal’ applies to different life domains. You could be ‘normal’ at work but not normal at home. You might not feel normal when compared to your peers, but your family might say you are acting ‘back to normal.’” This sent me back to my transcript with mindset coach Mara Powers. I didn’t clock it at first, but she was telling me this exact kind of thing would be hard:

It’s incredible how you can literally manipulate and gaslight yourself. Our brains are going to default to what they’re comfortable with, and if they are very, very comfortable thinking in a negative way…it’s going to require discipline and patience and a shitload of practice to think otherwise because you are basically rewiring an organ.

OK. So if the people who have always known and loved me (both as a diseased little thing and just a regular little thing) haven’t been sitting there thinking I am the absolute fucking worst, they’re probably not starting to now, while I’ve been needier than “normal.” The ones who are just getting to know me now, though? I guess that’s an opportunity to cool it on the constant “lookatmelookatmelookatme I am so sad, I am so selfish” language. Or, at the very least, just point them to my Substack and YouTube pages, where I am more articulately and less messily discussing who I am.

…because there’s no way anyone would look at those and think “hey, she writes 2k words about herself at minimum each week and blasts it out into the world? And she…vlogs?? Must be a chill lady. Must be selfless.” :) :)

How we’re eating through it

My continued attempts at making myself sick via salt consumption are simply not working. Try as I might—and, see below/please believe I tried this week—I need prosciutto, salami, and all kinds of brine inhaled thrice daily. And, if I’m being completely honest, I have started sneaking spoonfuls of ice cream, even though sugar is still pretty brutal on my insides. The idea of beautiful spring and summer nights without scoops of peanut butter-centric dairy kills me. I’ve thusly begun to train my body to handle this accordingly.

Til next week. Or not. I’d get it if you were fully fini with this by now. Either way, mwah mwah mwah, sicky sweeties.

Art by Amanda Suarez