On Making What You Need When It Doesn’t Exist

Reflections on My Sickbatical, Polycrisis, and the Inability to Conform

Screenshot from www.misfitmentalhealth.com of the quote from Jiddu Krishnamurti, “It is no measure of health to be well-adjusted to a profoundly sick society.” in bold text on a bright yellow background.

Somewhere online I recently mentioned that I was taking this unpaid time off work for a month, and I called it a “sickbatical”. Someone commented “That’s not a thing."

I realize, more and more, how adept the chronic illness and disability communities are with creativity, flexibility, and adaptation. It’s most obvious to me in contrast, with comments like this from people who are either close-minded or presumably able-bodied-enough, neurotypical-enough, and/or privileged-enough that the systems, options, and world that exists actually work for them.

I’m not sure how much this flexibility and creativity are innate, so much as practiced out of necessity until they become second nature. (Though actually, I think many people start out with more flexibility and creativity, but these are often conditioned out of us at an early age.) Many of us need to alter what exists or make something new from scratch because either what does exist (at best) doesn’t address our needs, or (at worst) actively harms us. This is what I imagine bell hooks meant when she defined “queer”, saying “it is not about who you’re having sex with (that can be a dimension of it), but ‘queer' as being about the self that is at odds with everything around it and has to invent and create and find a place to speak and to thrive and to live.”

It’s why I often have this visceral feeling that I’ve had as far back as I can remember, of moving through the world like a snow plow, feeling the resistance everywhere I go because so much was not a fit for me. It’s the feeling of having to advocate, innovate, and make space just to get by...and I guess hoping I leave the path behind me a little clearer for someone else. I’ve felt this whenever I’ve been told I’m “too _____” or “not _____ enough”. Or when I have dared to answer “Well that’s not how we do things” with “But what if it was?” Or when I wear a mask in 2025 and feel people’s reactions to my sheer audacity to care about my health - and others’ health, including their health - and to want to live.

Moving through a world that’s not made for me has become somewhat easier over time - but since becoming disabled, it’s meant that it’s very rare to get a break from it. Even though that muscle has been flexed and developed over time, it’s still exhausting and depleting to face so much friction just trying to exist…which is both why I needed a sickbatical and how I came to create one.

A few years ago, I took another month-long break. Back then, I had truly burnt out from the constant revolving door of doctor’s appointments, blood draws, imaging, treatments, therapies, and physical manipulations - which I wrote about here. (Learn from my mistakes and how internalized ableism will take you down with its urgency!) That was probably my third experience with burnout, but the first with a side of Long COVID. There was no disability insurance or coverage of any sort that paid for the time off, so despite racking up nearly $30,000-worth of medical expenses trying to get better, it reached a point where even though my wallet couldn’t manage the break, my body had no other choice. I referred to that time as a sick leave.

Since then, I've known several people who have taken sabbaticals and shared their experiences of the time. It’s seemed like an intentional break to really focus on projects and things that couldn’t really get prioritized with the day-to-day demands of work and life. It was a slower pace but with goals in mind of what that time would be.

So when I say “sickbatical”, I mean some combination of my body needs rest, I need space for my mental and emotional health, and I need to focus and repurpose my energy toward different professional things for awhile. And because of how limited my body is, and the demands placed on chronically ill and disabled people, I just cannot do these within my usual day-to-day routines.

Long COVID limits my capacity so much that I cannot keep up with all my adult responsibilities, nor with all the enjoyable and necessary forms of enrichment that prevent things like burnout. And because we live in a cruel capitalist hellscape, I’ve had to prioritize the limited capacity I do have for working to have an income instead of resting. I’m fortunate that I love what I do, and to be able to work at all, and that I can work for myself so I can adjust things as I need them to be without fear of getting fired.

However, it has not been financially sustainable to only work 10-15 hours a week for most of these 5+ years, as costs of everything have continued to rise, and as I pay out of pocket for most of the non-insurance covered, ad hoc “treatments” to take the edge off my Long COVID symptoms. And this is somewhat made unsustainable by insurance companies, who have not given therapists any substantive pay increase in…ages? Certainly not in the time I’ve been a paneled provider. (Did you know that brand new therapists get paid the same by insurance as 15-year veterans like me? Or that people with ethical or legal complaints against their license get paid the same as professionals who strive to be ethical in the care they provide? And that we generally cannot individually get raises? I’ve requested them and been denied.) Being so limited in how much I can work and how much I can earn will be increasingly unsustainable as tariffs hit, if insurance rates skyrocket as expected next year, and with all the chaos yet to unfold.

So, this sickbatical is also needing to pause to sort out what additional things I need to add or try in order to make things more sustainable for myself, especially with everything on the horizon. I feel this pressure even more now, as I’ve spent Disability Pride Month watching them target these vulnerable groups and dismantle the few existing social support safety nets that I could very well need in the future…while also watching in the last several months as they gut public health care, funding for Long COVID research, affordable healthcare, and access to vaccines. It can’t put words to the feeling/knowledge that the next COVID infection I get (which is getting more likely with every decision they make, and with so few people willing to stop transmission of illness) could very well leave me unable to work at all, while seeing the barebones supports I could need be intentionally eviscerated in real-time.

In my first few days of this break, I brainstormed a list of possible things to do with this time - appointments to make, people to connect with, work to catch up on, new projects to plan, chores to do, enjoyable things I never have energy for. There were over 80 things, and I had to reckon with the reality that I would only scratch the surface and could use a break probably 3 times as long. There is no real reason for 4 weeks, and it’s not a magic number. I just know that breaks of 1 or 2 weeks have not or barely been enough to let my body rest enough to recharge, so it would certainly not be enough to rest AND try to do any of what I needed this time for.

Also, if I’m being real, as much as I could use it, I couldn’t afford a longer break because I can’t really afford this break. But sometimes, you reach a point of not being able to afford NOT taking a break, because in order to keep going, you need to stop, refuel, and reorient, and reprioritize. The only models that exist seem to imply that either you are permanently and fully disabled and cannot work at all, or you are completely able-bodied and shouldn’t have any problem keeping up.

In reality, there are so many of us that can do a fair amount, but need some combination of support, working differently, working less, needing frequent breaks, needing longer breaks, or needing periodic breaks of varying lengths. Rather than giving into the false binary, I decided to trust that my needs and reality are somewhere in this middle, and that it would be beneficial to make what I need even though it did not exist as an option.

It’s taken a long time to learn that my read of things and intuition about my needs is valid, even when I look around and don’t see that reflected back to me. If we wait for these systems to give us permission to do what we need, we’ll be waiting forever.

Unfortunately, unlike many traditional sabbaticals, this time off isn’t paid - and as such, is also complicated and not easy to make happen. This is why so many people work until they fully breakdown and cannot function, and I’ve learned this the hard way enough times to try to head this off.

As much as it’s adaptive and necessary to take extended time off sometimes, there is no financial support for something like this. I looked into grants, programs, and fellowships that do pay for recipients to take time off - either to personally recharge and/or to produce creative projects or writing (which is what I’m spending some of this time on). However, everything I found seems to only be for people who are in specific leadership roles, particular industries, or have able-bodies and ability to travel and congregate with other participants. It’s important that these opportunities exist, and there’s so much need for even more of them that I have to imagine they are exceptionally competitive. But yet again, there’s no exact model of what this break is or access to financial support among the closest options I could find.

To be neurodivergent, chronically ill, disabled, queer - or all of the above - often means being in the in-between liminal space of: what exists isn’t for me, I can’t get by without something changing, so where is the third option? It’s learning to persevere when you keep hitting barrier after barrier, and subverting the either/or dynamics and expectations of this world. In this case, it’s sort of twisting the gross old business adage “you have to spend money to make money” into something more akin to “sometimes you have to go without money so your body can continue to be used to make money”.

::insert daydream of a world in which people’s basic needs are met so they can exist without pressure to perform, produce, and conform to survive::

At its core, I think of a sickbatical as the ultimate crip time. For the uninitiated, “crip time” is a concept from the disability community where "rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds”, as described by Alison Kafer. Sometimes I feel in my bones that the expectations and standards of the able-bodied world will break me if I don’t break them first and make a new way.

So no, there is no model for what I needed, so that’s what this is - my attempt at developing an accommodation that I need to keep getting through life in a world that just keeps making that continuously more difficult. This time is a little bit enjoyment, a little bit work, a little enrichment, a little rest, and a little innovation. And actually, a lot of space for grief.

Yes, there has already been so much disenfranchised grief of developing Long COVID, trying more treatments than I can count without real success, adjusting to a limited body in a world that’s increasingly unkind to anyone not superhuman, and reckoning with the society we could have had, that we got a glimpse of early in the pandemic. The one where the vast majority of people were working together to care for each other, in big and little ways. When there was unspeakable tragedy but people responded and rose to meet the moment. When the systems failed and communities came together to support the vulnerable. When we were actually all in this together, and understood that what is a threat to one of us is a threat to all of us. In bypassing the processing and integration of the collective trauma we experienced in the early pandemic, I fear we’ve also bypassed the collective strength, creativity, and imagination that started to grow during that time.

On top of that grief, so much has happened in the last 6 months (and beyond, really) that it has been impossible to keep keep up with the onslaught of changes, attacks on human rights and civil liberties, and complete loss of basic human decency. Honestly I have not had enough space to really reckon with this in a meaningful way, and I genuinely do not understand how people are still just able to go about their lives, business as usual, clock in/clock out, then do it all over again…as though we are not witnessing some of the worst, collective, widespread human rights violations - close to home and abroad - that many of us have seen in our lifetimes. I won’t feel bad for being moved by images of starving children or being outraged by atrocities like genocide, kidnapping, and imprisonment of innocent people.

Even though I’m aware there has been intentional psychological warfare, and intellectually knew this was coming because they showed their cards, it has not made dealing with it any easier. And it’s concerning how well it’s been working, based on how often I hear passing comments of resignation, like “well I can’t do anything about it” or “I don’t like to think about it” or implications that “someone” has to do something. Call it my sensitivity or justice-orientation or whatever you like, but I guess I hoped there would be an understanding that what is allowed to happen to one group of people will only spread. That phantom glimmer of hope from the moment in time when we were “all in this together” still haunts me, and I need to take a beat to adjust my emotional bearings to grasp that this is going to be an ugly, dark, and long road to a better world. (More soon on how these efforts and communities can be actually inclusive and supportive of vulnerable folks, because so far, they have largely failed.)

If you are tired, struggling, and overwhelmed…you’re in good company. These are the price of paying attention these days. And they are amplified for those closest to impacts of the barrage of changes, those with limited capacity, anyone with sensitivities or burnout, those who also have compassion fatigue from caregiving or helping professional roles, and anyone who’s had a lot going on closer to home while all this has been developing. Prior to my break, I was looking for a resource on how to pace ourselves and sort of titrate when everything is a lot - because wow is everyone exhausted already, but disengaging this early is not going to do any of us favors.

Because I also did not find what I was looking for in that regard, I made it! The workshop that I’m running next weekend is one of the projects that I wanted to focus on bringing to fruition on this break, and I’m really pleased it’s happening. I’ve been trying for over 3 years to get some workshops going, and with this break I finally did it!

Other things I’ve done:

• slept in without an alarm all but 2 days

• made it in for a dental cleaning (which is no small feat when you’re still needing to avoid reinfections, have medical trauma, and have such limited capacity that leaving the house is hard)

• read an entire book!

• made some revisions to my website

• had an unfortunate kitchen accident when my Aeropress failed and spilled boiling water all over my hands, necessitating a trip to urgent care and a lot of wound management (it’s mostly better, but my hand still looks like a cheap leather handbag)

• my medical admin (appointments, prescription changes, etc.)

• medical admin for my cat (who has multiple allergies, asthma, and one working lung)

• about 1/10 of the house cleaning that needs to be done

• saw a friend for tacos

• did some marketing planning

• started outlining the book chapter I’m contributing to an exciting project, still to be announced

• decided to relearn how to play chess after almost 30 years

• consulted with another therapist on providing therapy to COVID Conscious clients without letting biases impact care

• did an interview with a journalist

• started planning an exciting livestream collaboration here on Substack, still to be announced

• started the preparations to start offering coaching (!!) to folks who are looking for support adjusting to the realities of limiting conditions - navigating healthcare and medical gaslighting, learning about their news needs, figuring out which accommodations may be helpful, and looking for guidance on how to talk to people in their life about these changes

• spent more time outside (by sadly not as much as I would like because Chicago keeps being overcome by wildfire smoke 😫)

• took a lovely workshop from Esme Wang on writing a memoir when you have brain fog

• and I have 10 days left…

So, I’m laying some groundwork, taking some chances, refilling my tank (think watering can for a garden, not gasoline like a machine), and trying to intentionally pause in the ways I encourage my clients to do…all in an unforging world that makes doing this actually quite difficult.

If you would like to support my sickbatical, consider attending my workshop, or you can share it with anyone who may be interested! (The algorithms are unkind to self-promotion, especially when you do not have the capacity to constantly post and be online - so I appreciate any help getting the word out!)

You can also subscribe to this Substack, or make a one-time donation using the links at the bottom of this page.

Otherwise, I will leave you with this:

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"What is a “sickbatical”?"

“That doesn’t exist."

.

"You mean a vacation?"

"You mean medical leave?"

"What do you mean?"

.

I mean

I am sick, and

.

My body needed rest

My psyche needed a break

My dopamine needed a recharge

My creativity needed space

My house needed cleaning

My spirit needed mending

My hope needed to be fed

My breath needed catching

My survival mode needed an intermission

My goals needed tweaking

The neighborhood cat needed petting

The fresh air (while we have it) needed breathing

The plants needed repotting

The collective tears needed crying

The memories needed grieving

The trees needed company

The tragedies needed witnessing

The plans needed making

The machines needed stopping

.

This machine needs stopping

Maybe it is not me that is sick, but the world

.

Won’t you sit with me awhile?

Let’s make it exist.