Chronic Illness

Traveling While Chronically Ill: My Must-Haves

Kate Sloan
gotta love those flattering airport portraits

Later this week I have to get on a plane for the first time in a while, and I’m dreading it. Of course, I’m thrilled to be able to go see my spouse, especially since it’ll have been over a month since I last saw them – but the travel itself? Not my fave.

Travel tends to be hell on my chronically ill body, for so many reasons: the stress, the rushing, the cold air, the cramped seats, the waiting around, the social anxiety, the lugging of luggage… Usually by the end of a travel day I am a husk of myself, like I’ve been body-snatched by a sullen alien. Not fun!

However, in all the travel I’ve done as part of this long-distance relationship, I’ve learned how to mitigate my symptoms as best as I can, before, during, and after traveling. Here’s what works for me, incase it helps any of you too…

 

Routine

Routine is the most important thing for me in my travels. Without a routine, I fall to pieces.

My current travel routine involves making a packing list about a week in advance, packing my suitcase over the course of 1-2 days before I leave (spacing it out as needed due to fatigue and pain), checking into my flight online in advance so I don’t have to do it at the airport, and getting to the airport at least 2.5 hours before my flight takes off. If it’s possible to pre-select a seat, I choose one by the window so I don’t have to get up/move around at all once the flight takes off, and can rest/nap if I need to. (I always have my eye mask with me to block out light incase I need a quick snooze, or am just feeling overwhelmed and need to exist only inside my own head for a while.)

Part of my routine is knowing exactly where I have to go and what I have to do: my terminal, gate, flight number, seat number, etc. I’ll stash my passport and boarding pass in an outer pocket of my carry-on bag so I always know where they are and can access them quickly. Basically my goal is to pre-emptively eliminate as much stress and uncertainty as I possibly can.

 

Outfit

My go-to travel outfit is as follows:

  • A simple modal slip dress, possibly with an Aerie bralette underneath
  • Black cotton leggings
  • A cardigan over top (cotton in the summer, cashmere in the winter)
  • Cozy socks
  • Black leather boots

Traveling is such an ordeal that I always want to be as comfortable as possible, all day long. If that means having to wear a literal nightgown onto the plane (albeit dressed up with various other elements to make it look more presentable), so be it! I also hate feeling stressed and rushed in the TSA line, so I engineer my travel outfits to be easy to disassemble and reassemble as needed.

Planes are usually pretty cold, regardless of what the temperature is outside, and cold is one of my big pain triggers, so I never regret having a cardigan with me. If it’s super hot out, I might keep the cardigan in my bag until I get onto the plane, but I always bring one.

 

Luggage

Luggage cubes are transformative! They are little zippered cases that you can use to organize what you pack. I’ve found them crucial for longer stays, when I don’t want to have to rip my entire suitcase apart to find a fresh pair of underwear or a new shirt. Usually I’ll keep underwear and socks in one, T-shirts in another, and dresses in another. Not only does this make my stuff easier to find; it also helps with compressing my clothes so they take up less space and I can fit more things in my suitcase.

I used to be the type of person who could pack a small carry-on and be fine, but these days I tend to take longer trips and also just don’t have the strength to lug a suitcase around the airport with me anymore, so I always check it instead. It’s pricey – usually $50 for one bag or $80 for two – but I view it as a “disability tax” I just have to pay because my body physically cannot manage as much as an able-bodied person’s can.

Having to wait around at the baggage carousel after my flight is sometimes annoying, especially since at that point I’m usually so mentally and physically exhausted that having to wait a few extra minutes feels like an affront to my sanity, but I just try to calm myself down by playing games on my phone until the bags come out.

 

Carry-On

My go-to carry-on bag is a black leather Holiday Lane Page tote by Kate Spade. Previously it was a big turquoise leather tote by Coach. My carry-on needs to be comfortable to carry and able to hold all my stuff. It also needs to have a proper zip closure so it doesn’t spill everywhere when I stash it under the airplane seat in front of me. I use the hell out of these bags so I usually have to replace mine every 2-3 years or so (the handles inevitably start to wear through and the bag starts to lose its shape from overuse).

I usually buy some snacks (ideally granola bars or protein bars) at an airport shop once I’ve gone through security and stash them in my bag. Travel sometimes makes me feel a bit faint from all the overexertion and anxiety, and slightly sugary snacks can help. Also always a good idea to grab some gum to chew during takeoff and landing to help with ear-popping. And I always buy some water, because plane air is incredibly drying and dehydration can exacerbate anxiety and pain.

I try to bring distractions that I find joyful and uplifting, since air travel is so… not. Usually I’ll bring my Kindle stocked with good books, my iPad with some games downloaded and some Instapaper articles queued up, my phone and headphones for listening to podcasts or music, and my Nintendo Switch or 3DS for gaming. Sometimes I’ll also journal on the plane, so I gotta have my Moleskine notebook and a pen that won’t explode in the air.

 

Meds

Air travel is so exhausting, stressful, and demanding for me that I always end up experiencing a lot of body pain during and after travel, so sometimes I’ll pre-empt it by taking a painkiller (naproxen) before leaving for the airport or getting onto the plane. It takes the edge off, at least. I’ll also make sure to take my iron supplement on a travel day because otherwise I run the risk of feeling anaemic and maybe even fainting.

My doctor prescribed me an anxiety medication, Ativan, which I only ever use in emergencies because it’s habit-forming. Usually I keep some in my bag when I travel, because I know from experience that delays, cancellations, last-minute schedule changes, and other stressors can trigger an anxiety attack for me pretty easily, especially since I’ve had so many anxious experiences in airports that my body has a somewhat Pavlovian reaction to them now.

If I’m really freaked out, sometimes I’ll take a weed edible before leaving for the airport, but I wouldn’t recommend this unless 1) you know the route of your journey very well and don’t anticipate it’ll change much AND 2) you have lots of experience with this particular intoxicant and can therefore behave yourself even if you get a little loopy. (It would not be fun to be kicked off a plane for belligerent behavior à la Kristen Wiig in Bridesmaids.)

 

Arrival

These days I will almost always order an Uber to take me from the airport to wherever I’m staying, if it’s at all financially feasible. The stress of trying to find my way to a subway station or shuttle bus after the ordeal of travel is just too much for my body and brain. I’ve learned from all my experiences that immediately post-flight is a time when I’m highly likely to feel weirdly depressed out of nowhere, due to sheer exhaustion, and that’s a state in which I often feel unable to figure out public transport, especially if I’m worried I might start crying in public (it happens!).

Once I get to my destination, I need to relax. My spouse knows never to plan anything heavy-duty for the night of my arrival. Usually we’ll go out for dinner at a low-key local place. Sometimes I’ll take a hot bath with Epsom salts to de-stress my muscles. Sometimes my spouse gives me a massage, or just holds me close and says things like “You’re safe” and “You did a good job today” and “All the hard stuff is done,” to let my nervous system know that it can finally relax. I get to bed early and usually feel much better in the morning.

 

Fellow chronically ill people, what helps you when you have to travel?

How I Track & Manage My Chronic Illness Symptoms in a Bullet Journal

Kate Sloan

I’ve long admired bullet journaling as a practice – like the art journaling and planner collage I did as a teen, it’s a way of making the everyday into something visually appealing and memorable. Life itself feels more beautiful, I find, when you document it in a beautiful way.

I was recently hit by a deep and recurring urge to return to this style of creative documentation. But, in particular, I’d been wanting to find a more concrete way of tracking my chronic illness symptoms. In seeking a diagnosis (which I’d been doing for over six years with no luck thus far), it can be helpful to have cold hard numbers to show to a doctor, so they can get a sense of how serious and ongoing the problem is. I’d experimented with symptom-tracking apps, spreadsheets, and digital notes, but had found it difficult to use these consistently enough to gather any real data. It was time for a physical solution.

While I no longer do much writing with an actual pen on actual paper, I’ve known for a long time that it can help unlock things in the mind that would’ve remained unexplored if you’d stayed in a digital medium. There are numerous scientists who have opinions on why this is; there are also cultural commentators, like Tom Hanks and John Mayer in the documentary California Typewriter, with their own views on why physically scrawling or hammering out a piece of writing can feel better and produce better results than digital alternatives. I doubt this is true for everyone, but it’s certainly true for me. All attempts I’ve made to journal on a computer, for example, left me feeling unable to dive as deep emotionally as I tend to when I let my thoughts meander through a notebook on my lap.

So I figured a similar principle might apply for tracking my various symptoms, remedies, ups and downs. I bought a bright yellow Leuchtturm1917 dotted journal (widely considered the best choice for bullet journaling aficionados) and some colored pens and highlighters, and got to work building my setup.

I should say upfront, what I’m doing is a very loose interpretation of what “bullet journaling” actually means. I’ve also pulled a number of ideas from various sources I found through Pinterest. Let’s talk about 3 of the main tools I use in my journal to help track and assuage my chronic illness symptoms:

Habit tracker on weekly spread

Lots of people do a “weekly spread” in their bullet journals, where they lay out the days of the week like a traditional planner, and write their commitments and appointments on the corresponding days. I got inspired by some of the journalers I saw online who were doing habit trackers as part of their weekly spread, so I decided to start doing my own.

Basically this is just a table with a list of habits I want to instill on the Y axis and the days of the week on the X axis. When I successfully do one of the things on my habit list, I fill in the square for that habit on that day. Pretty simple.

However, I continue to find it astonishing how motivating this practice is for me. The satisfaction of coloring in a part of the table and seeing the page get gradually more colorful… The ability to see, at a glance, whether I was good or less good at self-care during a particular week… The ability to triumphantly text my partner a photo of the days when I complete all of my habits… It’s all lovely.

I love that I can change up which habits I’m prioritizing from week to week; for example, if I’m having an active psoriasis flare-up, I’ll add “apply psoriasis lotion” to my habits list. The habits on my current page are: sunshine (get outside/feel the sun on my face), exercise, supplements, reading (at least 20+ minutes; must be a book, not an article or blog post), brush & floss, and intentional joy. That last one is the vaguest, but basically I’d define it as taking some time out of my day to deliberately experience something that makes me happy, whether that’s laughing my ass off at a Netflix comedy special, having a decadent jerk-off session in the afternoon, or cuddling my roommate’s cats while telling them how pretty they are.

I’ve genuinely gotten much better about sticking to these habits since I started tracking them in a journal. Would recommend!

Monthly health notes page

At the start of every month, I divide one page into 3 columns – pain, brain, and miscellaneous – and number the days of the month on the left side of the page. Then I make notes throughout the month about which symptoms I noticed and when.

This is fantastically useful for so many reasons. It gives me a record that a doctor might find useful. It gives me a clearer picture of how my menstrual cycle affects my symptoms. I can cross-reference this page with my habit tracker to see how various habits affect the way I feel.

In fact, I recently did exactly that, when I started having scary heart palpitations a couple days a week or so. I looked at my health notes and my habit tracker and discovered that the days my heart went haywire were all days that I had ingested both caffeine and a red panax ginseng supplement I’d recently started on. I did some research and found out that ginseng is known to increase heart rate for some folks – and of course, so is caffeine. I also found out through research that the antidepressant I’m on, Wellbutrin, increases some users’ sensitivity to caffeine. With all of this information available to me, I was able to make the decision to stop taking the ginseng supplement and limit my caffeine intake going forward. My heart palpitations haven’t returned since I did that.

I also like that the health tracker page gives me a place to brain-dump any random symptoms I might be experiencing that my hypochondriac brain thinks might be perilous. Looking back on this page helps me see that most of the stuff I was worried about turned out to be nothing (or, sometimes, turned out to be anxiety-related).

Self-care bingo

I read about this in a bullet journaling blog post and loved the idea immediately. Self-care is definitely an area where I need as much help as I can get, being a depressed and anxious workaholic prone to destructively high expectations for myself. I liked the thought of “gamifying” my self-care to make me more motivated to actually do it.

At the start of each month, I draw out a 6×6 bingo board and fill in each square with something specific that I want to do to reduce my stress level and increase my joy quotient. Some of the things repeat from month to month because they work consistently for me – like “take a bath” or “no social media for 3 hours” – while some get changed up.

This spread gives me permission to be nice to myself; self-care feels “productive” because I know I get to fill in a little square on my bingo board after I do it. As a person who has often beat herself up for reading or playing video games because those activities “weren’t productive,” I know that I struggle to do things just for the pleasure of doing them; there’s almost always some guilt and/or shame attached to that for me. I’m working on it in therapy (among other things), but until I figure out a better way to deal with that problem, this self-care bingo thing seems like a great stopgap.

 

Have you ever used a bullet journal to track or mitigate your chronic illness symptoms?

7 Ways I Manage My Energy As a Chronically Ill Freelancer

Kate Sloan

There are many ways in which I am deeply privileged, and one of them is that I’ve been able to carve out a career for myself as a freelance media-maker working from home – which comes in handy an awful lot, seeing as I’m also chronically ill.

In my early 20s, I had an office job where my shifts went from 6 a.m. to 12 p.m.; I had to set my morning alarm for 4:45 a.m. to get out the door in time, and even then, I often arrived late, foggy-headed and clutching caffeine like a lifeline. I literally can’t imagine what it would be like to try to do that now, in my 29-year-old achy body that sometimes needs 2-3 days of rest to recover after carrying a load of groceries home.

Energy management has become a more and more important skill for me as my illness has gotten worse. It’s not easy, but usually it can be done. Here are some strategies I rely on; maybe they’ll help you, too, if you have issues balancing your energy levels enough to remain as productive as you want to be.

 

Change locations. You know how competitive swimmers often shave their body hair so they’ll be more aerodynamic (or, uh, aquadynamic)? That’s a great illustration of a principle I find paramount while living with chronic illness: If a task is hard, lessen or eliminate every changeable factor that is making it harder, even if those changes seem small or insignificant. They add up.

This is why, when I’m having a bad pain/fatigue day, sometimes I won’t even sit at my desk when I start work – I’ll just roll over, grab my iPad, and work in bed. Or curl up on my couch with my phone and start answering emails. If I feel depressed or isolated, sometimes I’ll take my iPad or notebook outside with me, and get some work done in a park or on a bench somewhere. All of these alternate locations can feel less physically and mentally demanding, somehow, than sitting at my desk – and that can make a big difference in my overall output.

 

Take breaks to rest. I used to “rest” mid-workday by eating lunch at my desk while watching a YouTube video, or (even worse) catching up on articles I’d been meaning to read. But this isn’t really rest, in my opinion – or at least, it’s not sufficiently restful to charge me up in the way I need when my workflow is interrupted by fatigue.

I’ve learned that I need to take at least 1-2 periods of actual rest during any given workday. For me, that looks like spending anywhere from 20 minutes to an hour lying in bed, doing something very low-effort like reading a not-super-cerebral book, listening to a podcast, playing a video game on my Nintendo 3DS, or literally just lying there. It makes a HUGE difference for me; I find myself much more alert and able to work after resting for a while.

I’ll also take naps as needed, complete with an eye mask and earplugs (would recommend), but I try to limit those because they can fuck with my sleep schedule.

 

Weekend Wednesday! My spouse’s company is currently testing out a 4-day work week program, after news of excellent results emerged from other companies doing the same. They’re taking Fridays off – but I’ve recently started doing something similar: taking Wednesdays off.

There was one glorious semester during my time at journalism school when I had classes on Monday and Tuesday, and on Thursday and Friday, but none on Wednesday. It meant I could take a break, in the very center of my week, to recoup and prepare for the rest of the week. Sometimes I’d sleep all day, if that’s what I needed; sometimes I’d catch up on homework, do some errands, spend time with family, go to doctors’ appointments… whatever I wanted or needed to get done, but didn’t have the energy to do after 6-hour lectures on digital journalism ethics.

I recently decided to try to return to this routine. CGP Grey calls this practice “Weekend Wednesday” (although, in his version, you work on Saturdays to make up for it – which I don’t do if I can help it). It has helped a ton; my Thursdays and Fridays go much smoother now that I’m not totally run-down and haggard by the time they arrive. I think calling this practice by its cute alliterative name somehow legitimizes it in my mind; I no longer feel guilty about taking the entire day off each week. I know I’m extremely lucky to be able to do this.

 

To-do lists galore. I can’t manage my energy effectively if I don’t even know what energy-expending tasks will be expected of me on any given day. Every morning, I write out my tasks for the day in my Notes app. Sometimes – especially on days when I feel under the weather – I’ll write myself (or ask my partner to write me) a schedule, with certain tasks assigned for certain times of the day. This allows me to map out everything I have to get done and space everything out appropriately.

I also find to-do lists helpful on days when I can’t get everything done, because instead of despairing about what a failure I am, I can just move those items to the following day’s list, and trust that I’ll do them then.

 

Spacing & pacing. There was a time, earlier in my life, when I could have, say, recorded 2 podcasts, written a blog post, had a catch-up phone call with a friend, cooked dinner from scratch, and gone to a party, all in one day. There was a time – but that time is no longer.

I’m in the privileged position now of (usually) being able to space out my appointments and deadlines in a way that respects my waning energy levels. I try, for example, to never schedule more than one podcast recording in a day, because they’re one of the most energetically draining things I do all week. I also try to keep big assignments’ deadline days completely open, so I can spend the whole day polishing and editing, without needing to stress about getting anything else done.

When I find myself overbooked, I schedule at least an hour of rest between activities – and if I can’t do that, I plan to take it easy the following day, because I’ll need to.

 

Maintain boundaries. As many freelancers have learned the hard way, “I create my own work schedule” can all too easily devolve into “I work all the time.” I used to, but now I do not, because I cannot.

These days, my work hours are generally 11 a.m. to 6 p.m.; I’ve learned from experience that while I can work outside of those hours, the quality of the work tends to suffer if I do. It is difficult sometimes to hold this boundary, particularly when it comes to scheduling guests on my podcasts, but I try my best to stick to it, because even the coolest, most captivating guest would prefer to talk to the version of me who isn’t slurring from fatigue and distracted by pain zaps.

I have to maintain time- and energy-related boundaries in my personal life as well as my professional life. Often, this means leaving a social event while I’m still having fun, so I can get back to my bed before the ton-o’-bricks that is fatigue finally hits me. It sucks, but it’s necessary self-care, and also keeps my friends from having to deal with my tired, irritable self at those times.

 

Respect the body’s natural rhythms. As I mentioned, I tend to work from 11 a.m. to 6 p.m. (if that), and that’s because I’ve observed that those are my most productive hours. I was only able to discover this for myself after quitting the dayjob that had required me to get up at 9 a.m. for 4 years. Life suddenly felt less cloudy, depressing and demoralizing once I was able to wake up whenever my body felt like waking up. (This same effect is also why, incidentally, I very nearly failed the only 8 a.m. university class I was ever forced to take, solely because it was at 8 a.m. Classic.)

Fellow chronically ill writer Esmé Wang has written before about getting her best work done between the hours of 4 a.m. and 9 a.m. That’s inspirational to me – to know yourself and your body well enough that you can design your life to suit your needs, and to unapologetically hold those boundaries. Ah, bliss.

 

Fellow chronically ill babes, what are your preferred strategies for managing your energy well enough to stay relatively productive?

Disability Impostor Syndrome Fucking Sucks

Kate Sloan
I don’t know what’s going on in this picture, but I’m holding a spoon, so it seemed relevant.

This has been one of those chronic-illness weeks when I felt legitimately sick, legitimately disabled. It’s nice, in a way, to be able to banish the voices of impostor syndrome from my brain, if just because the rest of me is throbbing with pain. (Hey, that rhymed.)

I powered through that impostor syndrome in so many ways this week. I made accommodations and adjustments for my illness. I took Wednesday off work – a “Weekend Wednesday,” as CGP Grey would say – and mostly just laid in bed trying to breathe through the pain, distracting myself (sometimes well, sometimes not-so-well) with books and video games. I got as much sleep as I could, drank as much water as I could. I laid out my schedule for the week in such a way that I only ever had a maximum of two commitments per day, two “things” involving interacting with other humans, because this involves suppressing the visible signs of my pain and fatigue and is thus, in itself, exhausting.

I bought a cane.

There is a scene in the 1993 TV movie To Dance with the White Dog, a movie my mom and I have inexplicably watched together at least a dozen times, where the protagonist – an old man named Sam – finds that his physical condition has worsened to the point where he needs a mobility aid. One of his sons brings him a walker, and at first he refuses to use it, remarking petulantly that it’ll make him look like “a poor old man.”

I thought about this scene this week when I was limping around my apartment, needing to rest every few steps because of the reasonless pain stabbing through my knee. I’d considered buying a cane in the past for days like these, but I knew it would make me “look disabled,” and somehow I felt like I wasn’t “disabled enough” to deserve or warrant “looking disabled.” It was all too similar to how, when I was 15 and had just realized I was sometimes attracted to women (though still mostly attracted to men), I felt weird about wearing rainbows and bi pride flags on my person, because I worried I’d be misleading people somehow. By what? Flagging as queer when I am literally queer? How ridiculous.

It’s the same principle. If a cane would make it even 10% easier or more comfortable for me to get around, why not use one? Why not see if it could help more than 10%, even?

Would people see me on the subway or streetcar and ask me why I need a cane when I’m young and my body has no visible, structural issues? Would I then have to explain that I have a chronic pain disorder with no symptoms that are actually observable or provable from the outside, and that I don’t even have an official diagnosis? Or would I be filled with such rage and indignation that I’d have to limp off the vehicle to catch my breath and angry-cry in a subway station?

I started reading about disabled femmes-and-femme-adjacent-people who use canes. Gorgeous movie star Selma Blair has multiple sclerosis and walks with a cane. Canadian sex educator Kaleigh Trace was injured as a child and uses two canes. Local legend Claire AH, whose storytelling and matchmaking skills are unparalleled, walks with a cane after having some strokes a few years back. Witchy zinester Maranda Elizabeth uses (and writes thoughtfully about) using a cane. There is plenty of inspiration out there to be found.

As I flipped through FashionableCanes.com – what a website! – I found myself, again, wondering if I was just being dramatic, exaggerating my own symptoms to myself, even as a heating pad encased my throbbing knee and I popped yet another naproxen for the grinding pain in my hipbones, ankles, and elbows. I considered a cane of clear lucite, but determined its near-invisibility could be a drawback for a disability that’s already so frustratingly invisible. I contemplated stately wooden canes, the likes of which might’ve been carried by a well-to-do gentleman in Victorian England, but just didn’t think I could pull off something so sophisticated. Eventually I settled on a blue wood one with an ornate chrome-plated handle. It’s classic but a little flashy. It felt like “me,” or at least like the closest thing to “me” I could find while shopping for a product I still wasn’t convinced I really needed or deserved.

I had a phone call with my doctor booked for Friday morning, during which I planned to ask her to refer me to a local chronic pain clinic. My doctor, notoriously, is not great about my pain; she never seems to take it very seriously, and the sheer fact that I’ve been complaining to her about it fairly regularly for over 6 years and have not even received a definitive diagnosis speaks volumes. The night before the appointment, my partner Matt said, haltingly, “I have a proposal for you… and please feel free to say no if you want to… but I think we should do some medical roleplay so you can practice what you’re going to say to your doctor tomorrow.” A tear immediately slid down my cheek. My wonderful spouse knew that advocating for myself is not my strong suit, especially in medical situations, in large part because of the very impostor syndrome this entire post is about. It’s difficult to make the case that you deserve a diagnosis and a treatment plan when you don’t actually, 100% believe that you do.

So we roleplayed. Matt pretended to be my doctor and asked, “Are you sure you need to be referred to this clinic?” and “Why now?” and “Is your pain really that bad?” I struggled through my deep self-doubt and self-loathing to answer: “Yes.” “My condition is worse than ever and I need help.” “My entire body hurts, at a minimum 4-out-of-10 intensity (and usually higher), every single day of my life, so yes, it is really that bad.”

I found myself responding to these questions almost as if I was answering on behalf of someone else, someone whose pain I had no doubts about, whose struggle I knew for a fact was real, whose quality of life I felt should be better. I was able to tap into a rare sense of authenticity and deservingness. It was almost as if placing the order for the cane had cleared some cobwebs in my mind, enabled me for the first time to truly, deeply understand that I am actually disabled – however invisibly – and I deserve to have that acknowledged and addressed by the people whose literal job it is to acknowledge and address it.

So the next morning, when my doctor predictably said, “Are you sure you need to be referred to this clinic?” and “How bad is your pain, really?” I was prepared.

“I have done the research and I believe this clinic is the best option,” I replied, calmly, coolly. “It is not acceptable to me that I’ve lived with daily chronic pain for the past 6 years, and I’d like to seek a diagnosis and treatment.”

She filled out the referral form while I stayed on the phone. “Where is the pain located?” she asked, when that question came up on the form, and I replied, with total confidence (because it was true), “All over my entire body.” She did not argue with me. She did not dismiss me. She just filled out the damn form.

In every area of my life where I have experienced impostor syndrome – my queerness, my kinkiness, my success as a writer, and my disability – I have found that believing fully in my own legitimacy is often the first step to getting other people to see me as legitimate. It is unfortunate that this is the case, but it is useful to know. As soon as I firm up my convictions and declare to the world that I really am the thing that I really am (what a concept!), they tend to believe me. I know I’m blessed and privileged in this way, and that this unfortunately isn’t the case for everyone: racial healthcare disparities, trans healthcare gatekeeping, and other injustices still run rampant. But if my confidence in my own labels can convince even the occasional person that they are legitimate, that confidence is worth cultivating.

I have a feeling that the day I show up for my first appointment at the new chronic pain clinic, my new cane gleaming in my hand, I will feel like an utterly new woman – a woman who is unapologetically, unreservedly, and undoubtedly herself, disability and all.

My New Work-From-Home Setup, Part 1: Working in Bed

Kate Sloan

Lately I’ve been overhauling my entire work setup at home, and loving it. Seeing as I’m now fully self-employed and perpetually juggling a full docket of blog posts, client work, podcasting, and book-writing, it felt important to make some changes so my setup would be as well-tailored to my needs as possible.

I’m gonna do another blog post soon detailing the changes I made to my main workspace at my desk (I’m just waiting on my new monitor to be delivered!), but today I thought I’d tell you about another “workspace” of mine that I’ve also overhauled recently. Let’s talk about what I use when I’m working from my bed.

See, as a chronically ill person, there’s usually at least 1-2 days per week when I’m too achy, sleepy, and/or gloomy to sit at my desk for long stretches of time. On those days, I tend to curl up under my duvet, surrounded by strategically-placed pillows, for a supine work sesh.

My old bed-work setup consisted solely of my laptop (a MacBook Air) and a lap-desk from IKEA that keeps my computer from overheating on the duvet and also has a compartment where I can store my iPhone upright for easy access. However, my 13” computer is a bit bulky for this purpose, and I wanted a system that was smaller, sleeker, and more portable, especially since (in non-pandemic times) I travel a fair bit and don’t always want to bring my big ol’ lap-desk with me.

The main component of my new bed-work setup is an iPad mini 5. Mine is a 64GB model in space grey which I bought refurbished last year, having noticed that my chronic pain had gotten bad enough to warrant a smaller, lighter device for difficult days. In the months since, I’ve more often used it as a leisure device, for watching Netflix, YouTube, and (yes) porn – but it works quite well for professional tasks as well, because it’s fast, powerful, and versatile, and has a beautifully bright and vivid screen.

When I want to work on my iPad, I hook it up via Bluetooth to my pale pink Logitech K380 keyboard. I picked this keyboard because it’s one of the Wirecutter’s top recommendations, and I absolutely love it. The keys are pleasantly clicky-clacky, which I enjoy in contrast to my laptop’s hyper-quiet keys. I also love that this keyboard can be connected to up to 3 devices at a time, which you can switch between with a press of a button. This means I can use the same keyboard whether I’m typing on my computer, my iPad, or my phone. It’s quite slim and light, so it’ll be easy to throw it into a purse alongside my iPad if I ever want to get some work done at a café or another public place. The one thing this keyboard lacks, that I wish it had, is a slot for propping up my iPad so I don’t have to bring an iPad stand with me. I recently ordered a typewriter-inspired Knewkey mechanical keyboard which will do a better job of this when I need it.

Speaking of iPad stands, I do need one while working in bed, and the one I chose was a recommendation from my tech-nerdy spouse Matt. It’s the Yohann iPad mini stand, a gorgeous piece crafted from walnut. Matt recommended this stand for me largely because it’s designed to work well on soft surfaces, like a bed; its curved design enables it to keep my iPad upright at a workable angle even as I shift around in bed, adjust my pillows, etc. At $129 USD, this was a pretty hefty investment for something that simply holds my iPad up, but it’s 1,000% better than what I was doing before (attempting to prop up my iPad against a stack of pillows or books), so to me it was worth the dough.

The final component of my work-from-bed setup is my Adonit Mark stylus, which I bought because the Wirecutter recommended it and also because it comes in a stunning shade of turquoise. (I love this shade so much that it’s actually the exact color of my duvet cover, which unfortunately means I sometimes misplace the stylus in my bed due to how well it blends in!) At just $20, this was the least expensive part of my bed-work overhaul. A stylus enables me to “click on” things on my iPad’s screen without having to reach too far with my hands, which is suuuper helpful on bad shoulder/neck pain days.

I also have a 6-foot-long charging cable for my iPad, so I can charge it while I’m working no matter where I choose to situate myself in my bed. I am a big fan of extra-long charging cables in general, especially for chronically ill people, because unlike shorter cables, they don’t require you to choose between charging your device and staying in a comfortable position.

Software-wise, on my iPad I usually use Google Chrome for any in-browser writing (such as this blog post), Google Docs for articles and client work, and Scrivener for my books. These all sync across my various devices seamlessly, making it easy to move my entire workflow from my desk to my bed when I need or want to.

This is what’s working for me; I’d love to hear from other writers in the comments about what works for you when you write in bed!