On Being a Chronically Ill Writer

My daily routine is more affected by my chronic illness than I’d like to admit. Work can’t start until I manage to forge a path through my fatigue with the requisite amount of coffee and good music; task-switching and location-switching are informed by which positions my body can tolerate that day and which it refuses to; and when my pain decides that the work day has ended, I usually have to listen.

It’s – to say the least – a bummer, especially since I used to be renowned among my friend group and my online communities for my productivity as a writer. The same impulses still come up as before, the ones that pushed me toward creativity and stamina and long sore-eyed hours in front of the computer, but my body cannot enact my mind’s wishes on most days now and it makes me feel like a failure. Like I’m failing not only myself but also all the people who taught me how to write and all the people who believe (or believed) in me as a writer.

I seem to come back to Esmé Wang’s blog The Unexpected Shape over and over again as I wade deeper into the chronic illness life. Esmé is one of my favorite writers, and – like me – she deals with pain and fatigue (among numerous other symptoms) as part of her daily life. She’s written a lot about “creating a healthy writing practice when your health doesn’t want to cooperate,” and I’ve found her suggestions helpful, so here are some of mine, incase they can help anybody else.

I keep a to-do list almost every day, which boils down my most pressing tasks to an easily digestible form. The desire to tick those boxes and complete the list is sometimes stronger than the downward gravitational pull of my body’s limitations. When there’s only one more thing left to do on the list, usually that fact alone is enough to get me to roll up my sleeves and work on it – even if, by that point, I have to go very slowly and take many breaks.

I have a padded lap desk that I use when I’m in bed, to hold my laptop steady and keep it from overheating on the duvet, or burning my skin (temperature sensitivity is sometimes a symptom of mine). However, depending on where my pain is manifesting on any particular day, it may not always be possible to comfortably work in bed – so I move around, from the bed to the couch to the desk to the chair, looking for a few minutes of relief in which I can type a few hundred words or answer a few emails.

On days when my body is rebelling so much that even sitting at my computer feels exhausting and unfeasible, I’ll use the Notes app on my phone, which syncs to my other devices so I can easily copy and paste the text to where it needs to go later when I’m able to. I haven’t needed dictation software as of yet – the way I write and edit is exacting and particular in such a way that I get frustrated at the very thought of not being able to see what I’m writing as I write it – but am keeping it in mind for if/when my level of debilitation progresses enough to make it necessary. On especially bad days, sometimes I’ll write in longhand (I like Blackwing pencils and Moleskine notebooks; they make this process feel glamorous and easy) and then type up the words when I can.

I rely a lot on pre-scheduling. This was always true, due to the way the hypomanic episodes of my early 20s made me want to write, write, write on certain days while depression kept me uselessly crying in bed on other days. Now, I’m more aware than ever that any day – or even hour – when I feel capable of working is worth taking advantage of, if I can. Doesn’t matter if a blog post won’t be published until Thursday; one motivated and limber-fingered hour on Tuesday might be the right time to get it done. I try, as much as I can, not to leave writing tasks until the last minute before the deadline, because I can’t control what my body will be doing at that time.

I take naps as needed, which I’m fortunate to usually be able to do, due to my freelancer lifestyle. A good eye mask is a must-have for mid-day naps. My body pillow helps keep me comfortable while I’m resting. I use the Clock app on my phone to set timers/alarms so I don’t nap the whole day away.

I have a cheap microwaveable heating pad with Velcro straps that can be positioned on sore body parts as needed. I want to amass a collection of these so I don’t have to choose between treating multiple sore body parts on especially bad pain days.

Comfortable clothing is crucial, especially since my fibromyalgia-esque chronic illness sometimes causes flare-ups of hypersensitivity to scratchy or restrictive garments. I like extra-soft tri-blend T-shirts, MeUndies modal underwear and lounge pants, and (when I’m feeling a bit fancier) modal slip dresses and vintage silk robes. I particularly like loungewear that can be re-styled in an outdoors-appropriate way incase I need to dash out for a coffee or some groceries.

I’ve started using a pain tracking app to keep records of my pain’s intensity, locations, triggers, and treatments. I like this one because it’s super customizable; I can, for example, add “orgasms” as an option in the treatments category, or track my anxiety levels alongside my pain levels to see if they match up, or input impending menstruation as a potential trigger.

I’ll sometimes take a mid-day bath when my pain is especially bad, because I find the hot water gives me some relief for a while. Epsom salts are supposedly good for pain relief because of their magnesium content. Some people write in the bath; I haven’t yet figured out a way to do this that feels safe and sustainable for me, since I don’t want to get electronics close to the water and I worry about dropping my notebook into the tub. Maybe one of those wooden bathtub trays is in my future. For now, if I need to continue working while in the bath, I usually use it as reading/research time – my Kindle Oasis is waterproof and I can load it up with PDFs of my choosing, like scientific studies I intend to cite in an article or books I’m assigned to review.

Finally, one of my greatest tools in the fight against pain is cannabis – which, fortunately, is legal where I live. (By the way, why the fuck hasn’t Canada pardoned and freed everyone who is incarcerated on cannabis-related grounds? It’s bullshit with hugely racist motivations and manifestations. Anyway…) Usually weed makes me too spacey/giggly to work properly, so I mostly leave it until the end of the day when all my work is done, but sometimes my pain is bad enough that I need to treat it in order to focus on any task. In that case I’ll try to pick a strain high in CBD and low in THC, use it sparingly, and schedule my day so that I’m doing highly methodical or highly creative tasks while high – never anything requiring a lot of logical analysis or careful phrasing.

That’s what’s working for me right now. I’d love to hear from other chronically ill writers in the comments (or in your own blog posts, if you prefer – send me a link please!) about how they manage their symptoms and get their work done.

 

Additional resources I’ve found helpful on this topic:

Remotely Helpful, Part 3: Buddies & Boundaries

I’m back with more tips for working from home! These final 3 are crucial (but, frankly, all of them have been)…

#7: Find ways to combat loneliness.

Working from home is lonely as hell sometimes! Mostly I am okay with this, since I am super introverted and work best with minimal distractions (I still have nightmarish flashbacks to the office I once worked in that was filled with women in their early twenties constantly arguing about sex and dating). However, sometimes all that solitude is bad for morale! This is typically when I head out to a café (as discussed in my last post), text a friend for a mid-day chat, or schedule a co-working date with a pal if possible.

The most common way I deal with loneliness on the job, though, is social media. Twitter, Slack, Facebook, Instagram, Reddit: these services are often decried by productivity nerds for sucking up precious time and energy throughout the day, but used judiciously, I think they can be a godsend for lonesome freelancers. Where else could I gather on-the-fly opinions from my readers on stuff I’m working on, advice from fellow writers on methods and word choice, and terrible puns from sex-blogger pals across the globe?!

#8: Protect your time fiercely.

In my experience, if someone knows you work from home/are a freelancer, they’ll often assume that means you can do whatever you want whenever you want, deadlines be damned. I don’t know why they think this. It is annoying as fuck. Like, yes, I could step away from my computer for 2 hours on a Thursday afternoon to go see a movie with my mom or go shopping with a friend, and I appreciate offers to do so, but I don’t appreciate when those offers turn into pressure! This is even more aggravating when friends or family members see that you’re working but behave as though you’re playing a computer game or something – like they can interrupt you and distract you willy-nilly, because what you’re doing couldn’t possibly be real work, right?!

Now that I’ve gotten that rant off my chest… Being able to protect your time is really important as a freelancer. When a friend would ask me to hang out or do something for them, I used to say, “Sure, I’m free all day!” because that was technically true – my entire day was theoretically flexible and each item on my schedule was moveable. But nowadays, I’m more comfortable saying, “I’m free between [this time] and [that time],” or “I actually can’t, I have a deadline coming up, but maybe next week?” I’ve also gotten better at saying to people when they’ve interrupted me – in the politest way I can – “I have to get back to work now,” which elicits a surprised expression more often than you might expect. (Do these people… not know freelancing is work?!) This type of boundary-setting is mandatory for me if I’m going to get anything done ever.

#9: …but don’t forget to take breaks!

Trust me, your brainpower will eventually fizzle if you don’t give yourself enough downtime, and that type of burnout is really inconvenient when there’s a deadline around the corner! I understand the productivity-frenzied frustration of taking a break when you feel like you “have to” keep working – even if you’ve been working all day – but the “rest” part of the work cycle is truly just as important as the “work” part. Don’t lose sight of that!

I sometimes schedule things for myself specifically to force myself to take breaks – like buying a theatre ticket for a Friday night at the end of a busy week, or making plans to chat with a friend at a certain time so I have to get everything done by then and set aside my work for the day. I also like to use mid-day errands as a reminder to “switch off”: trips to the bank or the grocery store are restful compared to being hunched over a laptop, and I always listen to podcasts or music on my way to and from these places so my brain gets a little shake-up.

 

What are your top tips for working from home?

Remotely Helpful, Part 2: Locations & Logistics

Here’s part 2 of my 3-part series on working from home! I’ve got some more tips for you today…

#4: Mix up your location from time to time.

I know in my last post I proselytized the joys of having a functional at-home workspace, and that’s still important, but I nonetheless can’t imagine always writing at my desk at home. Eventually I always get bored and/or lose motivation. That’s when I know I need to shake up my location.

Coffee shops and libraries are great for this, and are staples for many writers – for actual scientifically-backed reasons, in some cases! If you know of a bar that’s chill about people bringing their laptops, that’s nice too (Northwood early on a weeknight is my Platonic ideal of a relaxed writing spot). I’ve known writers who loved to write in mall food courts, public parks, or subway trains. Just make sure that if you go somewhere with no WiFi (or with dicey WiFi), you prepare in advance any research materials you’ll need, so your work won’t be stymied by the lack of connectivity.

Of course, co-working spaces are also an option, but most freelancers I know don’t make enough money to be able to justify the expense. (For example, the Toronto Writers’ Centre charges $135/month, and Lemonade – Toronto’s answer to The Wing – charges $300-500/month. There are cheaper spots but all of them cost more than I’d ideally like to pay.) To approximate the co-working experience in a lower-budget way, you could head over to a friend’s house and work alongside them – just make sure to extend them the same courtesy another time, and bring snacks or coffee or something to express your appreciation for their generosity with their space!

#5: Give yourself structure.

This is probably the hardest part of working from home, and also the most important. Without a boss breathing down your neck, it’s easy to lose track of time and accidentally spend an hour scrolling through tweets on your phone or falling down a Wikipedia rabbit hole instead of doing your actual work.

The most beneficial thing for me in this regard is also very basic: a to-do list. The psychological pleasure I get when I tick an item off the list – or, better yet, when I tick all the items off the list – is a powerful motivator. This is doubly true because my partner has access to my digital to-do list and can check on my progress throughout the day. Having an “accountability buddy” can be a big help!

Some writers have strict daily schedules that they stick to. My work is too sporadic to be able to commit to something that stable, but if it works for you, do it! I also know lots of writers who use task management tools like Trello, Asana, and Teamwork – the latter of which I use at my dayjob and enjoy, because it allows me to track the amount of time I spend on each task so I’m more aware of my own time-wasting/procrastination tactics as they’re happening.

#6: Pay attention to your natural rhythms and arrange your work accordingly.

For example, here are some things I’ve learned about my own rhythms:

  • With very few exceptions, I am not very creative before 11 a.m., so mornings are best spent on more rote or administrative work (e.g. answering emails, scheduling tweets).
  • I am pretty useless for at least a day after arriving home from traveling, so I do my best to ensure I have no deadlines during that window, or that if I do have one, I complete the work in advance.
  • Nights aren’t usually very creative for me, unless I give myself a second wind with caffeine (which peps me up) or alcohol (which opens my mind to making more freeform connections).
  • If I’m really, really into a piece of writing – I’m talkin’ flow-state, “don’t talk to me, I’m working” levels of absorption – I should keep working until that feeling dissipates, if possible, because that’s often when my best writing happens.

Work in our society is largely structured around the idea that you should work at appointed hours all the time even if you don’t feel like it, which – setting aside the hellish capitalistic labor-fervor involved in that idea – just isn’t really in line with how the human mind functions. Freelancers (sometimes) have the luxury of being able to follow our own natural creative rhythms and take advantage of their gifts; this is one of my favorite things about my job(s)!

 

More tips to come later this week! Have you found any of these principles helpful in the past?

Remotely Helpful, Part 1: Flexible & Delightful

This is Remotely Helpful, a new mini series of blog posts where I’m writing up my best tips for working from home, ascertained from years and years of it! Here are my first 3 major suggestions…

#1: Take advantage of your flexible schedule.

Granted, depending on your exact work logistics, your schedule may not actually be as flexible as people tend to assume it is. (I have to get up at 9 every weekday for my dayjob, for example.) But if you do get to set your own hours, at least some of the time, I would strongly recommend making the most of that good fortune!

I love being able to do my laundry at 10 a.m. on a Tuesday when no one else is using the machines, or trotting down to my local movie theatre to take in a weekday matinee when my brain needs a break. I love finishing tomorrow morning’s work early so I can go see a comedy show tonight. I love making time to see a friend for coffee on a Thursday afternoon. I love that if I have an unmissable doctor’s appointment or international flight in the middle of the workday, I usually don’t have to ask anyone’s permission or move anything around, so long as I get the work done at some point.

In the capitalist hellscape that is our society, too often we’re trained to always be thinking about work, and to arrange our entire lives around our work. That’s bullshit, and not even compatible with keeping your brain in top-notch working order. If you have the freedom to do otherwise, you may as well!

#2: Putting effort into your aesthetic makes it easier to put effort into your work.

This isn’t true for everyone, but it is certainly true for me: if I take a shower, get dressed, and put makeup on, I will be plenty more productive than I would if I just lazed around in sweatpants all day. True, working in pajamas is one of the great joys of working from home, but if you find it makes your work ethic worse, it might not be worth it! (I am admittedly naked and wrapped in a bath towel right now as I write this, though, so… do as I say, not as I do.)

Some life hacks I’ve found for this: super stretchy jeans look like “real clothes” but can feel like pajama pants, lipstick makes me feel way more pulled together than I actually am, and nice loungewear is a step up from ratty pajama pants for days when I really can’t manage an outdoors-appropriate outfit.

#3: Your space should be as functional and pretty as you can make it.

For years, I found myself going to cafés to work almost all the time, and I eventually realized part of my reason for doing this: my workspace at home just wasn’t very inviting! It was dark and messy and boring. In the years since, I’ve become more stringent about keeping my workspace clean, and have spruced it up with additions like scented candles, inspiring photographs, and visually interesting knickknacks. One side of my desk is more podcast-focused (mic, pop filter, headphones, pencil and notepad for jotting things down during recordings) while the other side is more writing-focused (pens and pencils, research materials) so I can keep my head in the game. Inside my desk drawers are notebooks, more pens and pencils, and snacks to keep me going.

Other things that might work well in a freelancer’s workspace: good speakers, indoor plants, cable organizers, an ergonomic chair, an external monitor, and a timer (for using the Pomodoro technique or similar). A collection of reference books is also a must – I have journalism style guides within close reach, a whole bunch of sex books, and a stack of my old journals for when I plumb my sexual history to research a piece.

 

More tips to come! What’s your best working-from-home advice?

Freelance Friday: Structure & Secret Readers

Freelance Friday is my recurring feature where I answer your questions about the odd blend of blogging, journalism, and copywriting that is my career. You can read more writing-related content in my Blogging & Writing section!


Q. How do you structure your day so that you stay productive? I feel like if I worked from home, I would sleep until noon, procrastinate on my work constantly, and take terrible care of myself.

A. This is usually one of the first things people ask me about when they find out I work from home. Most people have some experience with aimless, unscheduled days – whether during a bout of unemployment, a gap year, or just a holiday – so they know it can be a mind-numbing and even despairing reality. So, they wonder, how do I, and others in my position, manage to do it every day?

It’s a fair question. When I first eased into the telecommuting lifestyle, I did exactly the type of shit you’re describing here. I slept too late, stayed up too late, skipped meals or overate, left work til the last minute or did too much all at once. I was like a teenager whose parents have gone away for a week in Bermuda. It was, shall we say, not ideal.

What I’ve found helpful isn’t glamorous or sexy: it’s just rituals and routines. I’m a Taurus through and through, so it takes me a while to warm up to changes in my daily habits, but once I do, they tend to stick. While I love the freedom and flexibility of the freelance life, I also recognize that I need to impose some rules on myself if I’m going to get anything done.

My dayjob, blessedly, requires me to get up around 9AM every weekday. I am a sleepy person and I have seasonal depression; if I didn’t have a reason to get up in the morning, I likely wouldn’t until late in the afternoon – so thanks, dayjob! I usually do an hour or two of that work before getting dressed and heading out to a nearby café to work on blog stuff, podcast stuff, journalism stuff, or more dayjob stuff – whatever needs doing that day.

Cafés are a crucial part of my workflow, and I’m certainly not the first freelancer to feel that way. Whether it’s the caffeine, the noise level, or just the impetus to put pants on and join the real world, there is something about cafés that helps me power through work that might’ve felt impossible if I was sitting at home in my pajamas.

Over the past year or so, I’ve become more methodical about taking a proper lunch break, rather than just working through it like a fiend. I’ll buy or make something filling, and settle in with a book/podcast/TV show/YouTube video while I eat. I found I was more prone to burnout back when I would half-work through my lunch, so now I force myself to get out of “work mode” for a while when mid-day hits.

My major not-so-secret secret weapon for productivity is a to-do list. I make one in my Notes app every day, and cross things off as they get done. My partner has access to the list, and his supervision makes this tool even more potent. It’s simple as hell, but keeping a to-do list religiously has boosted my productivity a lot.

Lastly, while it’s important to build structures that help me do my best work, it’s also important to build structures that let me relax at the end of the day. Freelancers and other self-employed types – especially those prone to hypomania! – are notorious for never really “clocking out,” and as necessary as that sometimes seems, it’s not healthy. When I’m done my work for the day, I close all my work-related tabs and apps, shut my laptop, and physically walk away from it. Often I’ll unwind by smoking some weed, reading a book, listening to a funny podcast, and/or writing in my journal. Then I’ll typically eat a late dinner and call my partner around 10–10:30PM. Our end-of-day phone conversations provide a grounding conclusion to my day, keeping me focused on something that isn’t my inbox or my Twitter timeline, which always feels so needed after a full day of work.


Q. Has anyone you weren’t “out” to as a sex writer ever found your blog and confronted you? How did you handle that?

A. While I wasn’t always “out” as a sex writer, I’ve never really been embarrassed when someone read my writing who “wasn’t supposed to.” I always figure that if they’re offended by it, that’s on them, not me.

Of course, that isn’t true in every case. If I was writing cruelly or nonconsensually about someone, it would be reasonable for them to get upset about that. I’ve definitely done this in the past, but I’ve learned from my mistakes. Nowadays, usually the only people I roast on my blog without their express knowledge are people who’ve deeply hurt me – people who genuinely fucked up in some way. Anne Lamott says, “You own everything that happened to you… If people wanted you to write warmly about them, they should have behaved better,” and I believe that, to some extent. Someone who dumps me in a coldhearted way, or ghosts me, or leaks nudes of people I love, knows they’re being a dick when they do that, so I have few qualms about lampooning these people on my site – which they probably don’t even read, anyway.

The caveat is that I’m never unnecessarily cruel and I never identify people who don’t want to be identified. I wouldn’t write mean shit about a Tinder hookup’s dick size for no reason; I wouldn’t publicize an ex’s name, or describe their appearance in overly specific detail; I wouldn’t spill other people’s secrets or their deepest shames. It’s just not nice. I’m not saying I was always perfect on this front, but these are the standards I hold myself to now.

That said – yes, there have been times when I’ve discovered someone was reading my blog who I wish wouldn’t. For example: a dude who had, months earlier, lied and told me he was poly when he was actually monogamous, thereby making me unknowingly complicit in him cheating on his girlfriend. Or an ex who’d broken up with me in an especially explosive and scary way. Or a guy I’d stopped talking to after he crossed numerous boundaries. While I don’t necessarily begrudge these people reading my site, it is weird when they tell me they read it, especially if they do so as part of a half-assed apology or an unwarranted desire to “reconnect.” It feels like a boundary violation. If you are reading this post knowing full well that I probably wouldn’t want you to be here… perhaps think a little about why you’re doing that, what you’re getting out of it, and how it might make me feel if I knew.

I’ve been much better about getting partners’ consent to write about them and running relevant details by them before publishing, ever since a boyfriend told me, during a breakup, that I’d made him feel used for material. Those consent practices are important, but it’s also important for me to be able to write about shitty behavior when people are shitty to me. It grinds my gears when a partner or a hookup does something reprehensible and then says, “Don’t write about that on your blog” – because the implication is that they want to appear good and sweet to my readers, without actually being good and sweet to me. Fuck that. If they wanted me to write warmly about them, they indeed should have behaved better.


If you have questions for this series, you can leave them in a comment below, or email them to me!