Tag: Chronic Illness

January 15, 2026 / Elise Carlson / 0 Comments

I think THE most important advice for writers is ‘do what works for you.’ This is ESPECIALLY true for neurodivergent and or chronically ill writers. Standard writing advice is oblivious to the impact of brain fog, and cognitive or sensory overload. It doesn’t understand the need for things to go according to THE PLAN. Or the epic struggle to FOCUS. And in managing all of this, there’s the challenge of balancing the desire to write with the NEED to rest, pace yourself and avoid burnout. In this blog I’ll unpack things I think its important for neurodivergent and chronically ill writers to consider, when setting up a needs fulfilling writing environment and developing writing habits. With some considerations for working with beta readers, editors and writing neurodivergent characters.

Sensory & Cognitive Needs and Writing Routine

Getting Your Environment Ready to Write:
Physically Enabling Set Up

I barely recall the last time I wrote at my desk. Sitting upright, with my feet on the ground, is draining for my Fibro. I only last so long before I need to slump (and a desk chair doesn’t really let me.) So I’m writing this blog while sitting on the couch, where I can easily lean back for posture support, and lean on armrests on both sides when I want to (one folds up when not wanted). And when fatigue kicks in; it reclines so I can put my feet up.

The other advantage of a couch is it doesn’t involve the bad or strained posture of lying in bed. I tried writing in bed with long covid. But my fatigue needed me to lie back, only a little propped up by pillows. Pillow propping was haphazard for my posture. And reaching the keyboard and holding my hands over it to type became a strain, and added to my fatigue.

So the thing that really enables better back support and posture for me is a lap desk. I’m tall, so I need to raise my laptop well above lap level to not get a sore neck. I also like having my ergonomic mouse and keyboard (necessities for my carpel tunnel) on the lap desk, and can even jam a plate for food on there, so I’m good to go!

Enabling Your Body to Write

Depending on your stamina, and bearing in mind what supports good posture; where is it best for you to write? Which chair has the best back support? Do you need armrests? Or to put your feet up? Do your monitor and keyboard sit at a comfortable, good posture height?

Another thing to consider if you struggle with stamina/ fatigue is having things you will need over the next few hours within reach. Eg. a bottle of water/ large glass and a meal/ snacks near to hand. And anything you need to refer to for writing; handwritten notes, maps, diagrams etc.

When I struggle with fatigue, the worst thing is having to get up for something I forgot, because its such a relief to sit and such a strain to get up again. So try and have every physical item you may need within reach before you sit.

Getting Your Environment Ready to Write:
Sensory Needs

Do you focus better with ambient noise like an open window, to hear wind blow through trees and bird calls? How about audio of a thunder storm? If you need more stimulation, do you prefer instrumental music? Enough to get your brain producing dopamine and the creative juices flowing, but no lyrics to distract you? Or do you need noise cancelling headphones to write in silence?

Also consider computer/ desk placement. Should you write facing a blank wall? Will you get distracted sitting opposite or near a window? Or will watching the occasional person walk past keep you entertained for mini mental breaks, on which you may otherwise become side tracked?

Do you prefer a bright ceiling light when writing at night, or the soft glow of a desk lamp? Are you likely to feel otherwise under stimulated while writing or editing? (I just picked up a fidget to keep me sufficiently stimulated and help me stay focused on editing this blog.)

In other words, for audio and visual input; which kinds of sensory information distract or help you focus? Which are comfortable or don’t feel right? Take them all into account when setting up/ tweaking your writing space! And choosing a location. I know some ADHD writers who write better at cafes or in the local library than at their house, where chores and other distractions nag at them.

Getting your Brain Ready to Write: Cognitive Needs & Routine

I can sit down ‘to write’ for three to five hours, even the entire day, and not write. I have ADHD. My brain doesn’t naturally produce enough dopamine, so I struggle to focus. My ‘writing routine’ tends to begin the day before, by going out for the day, or spending too much time on social media, and exercising. All of that ‘gets my fidgets out’ and settles me. Its also best if I read a book or watch a show in my genre, to get my brain in writing mode.

On writing day, I likely mess about on social media for one to three hours. No, its not ‘procrastinating.’ Again, its getting restlessness out, stimulating my brain and getting dopamine going, so I can concentrate. I may also write a newsletter or blog first, to get properly into writing mode, (especially when I haven’t written for weeks, even months, which is often.) Hell, I may go wild and actually take my ADHD meds!

Before you sit down to write, consider; what physical or mental activities get your body settled and brain into ‘the writing zone’? What do you need to do the day before and day of, to help your brain co-operate? When do you need to schedule rest, so you’ve got the physical and mental energy to write?

Minimise Distraction & Cognitive Overload

Household Chores

Before we talk about sitting down to write; what gets in your way cognitively? I struggle to focus if the room is cluttered, and my leather couch or carpet has crumbs on it. I can’t focus on a screen and words when the floor and furniture are screaming at me. It doesn’t work. Related, that washing will stay in the machine overnight, if I don’t hand it out before writing, because I will forget! Or I won’t focus properly on writing because too much of my brain is straining to remember.

So consider; do you need your space tidy and clean before you can focus? Do you find it easier to focus after the chores are done? Or are some physical chores a good break activity when you get restless mid-writing session?

Freeing Up Cognitive Load So You Can Write

The best time for me to work on my novels is after I finish and publish my blog for the month. Every second month, its also after I’ve fully drafted -if not sent out- my author newsletter. That’s because I tend to have both partially drafted in my head, which takes up brain power I then can’t use on my novel. So getting the blog and newsletter done first frees up space/ lightens my cognitive load.

Similarly, if I need to organise a social thing, or tradies to repair something in the house or something else that isn’t part of my daily routine; that needs doing first. Either because it will distract me from writing, or because I’ll forget to do the thing, or because the sense of having forgotten something will distract me from writing.

ONE Big Project at Once

I’m also prone to monotropic thinking, meaning my brain does best tackling only ONE big thing at once. For example, I’m currently preparing to attend a book fair and I have to order stuff, and print signs and prepare my stall; so now is NOT a good time to write. I need to know all of the stuff I want to get, order things that take time to arrive, and decide which day/ date to finish preparation, so I don’t leave it until too late. When I’m feeling calmer and less under pressure from having achieved all that, then I’ll be in the right state of mind -cognitive load sufficiently freed up- to focus on writing.

What Frees Up Your Cognitive Load, and Focus?

Do you find yourself choosing between doing one thing properly, or multiple things while half paying attention, and not very well? Is it easy to make mistakes, and miss things when you multi task? Does it stress you out, or require lots of effort/ energy? Do you also lean towards monotropism? And if so, can you plan your life to not do a second big cognitive overload thing on the same day/ week as writing ? If not and you struggle to get any writing done; don’t beat yourself up! You’ve got a lot on your mind!

Be Realistic and Kind To Yourself

My writing schedule involves not working on novels for weeks, even months while I organise paperbacks, attending a book fair, do work things, promote books and attend to life stuff. I can’t multi task those things properly AND simultaneously, so I try to start some things early. They take as long as they take, and I get to one big thing when I finish the big thing before it. It’s slow, and always takes longer than I want. But it does things to the best standard and its the least stressful, least cognitive overload, least error prone method to get anything done. So I stick to it for as many things as I can.

I remind myself that while I prefer to publish my blog by the 5th of each month and today is the 14th; I’ve never committed to having my blog up by a certain date. Its not like I’m putting anyone out or confusing them. I’m just not meeting a personal deadline/ not sticking to THE PLAN. It’s not what I’d choose if I could magically make stuff be the way I want it too, but its ok.

Again, I’m saying ‘don’t beat yourself up.’ But I’m also saying, use your autistic logic to convince your autism that its OK that you didn’t stick to THE PLAN, because the plan wasn’t realistic (which I have to do A LOT!)

Write When You Can

When to Write

Common writing advice is ‘write everyday.’ I hate that advice, because its ableist. I used to teach five days a week. I could not hold all of my students learning needs, the content of sixteen curriculum areas, and effective teaching and classroom management pedagogy, and all key dates and deadlines in my head, AND my world building, characters, character arcs, plot and what just happened and what to write next in my novel. It’s TOO MUCH/ cognitive overload.

I’ve never tried to write daily. I don’t write on days I teach. I schedule writing time on days when it WON’T be cognitive overload. Sundays used to work best, after a day of rest on Saturday.

So when trying to set up a regular routine of which days of the week/ month your write; consider which days your brain will be most crowded and your cognitive load heaviest. Try to choose days when your brain is likely to be overloaded with other stuff. If consistency or habit is the key; every Sunday is fine.

When NOT to Write

Much harder can be knowing when not to write. I knew for years that teaching days were cognitive overload days, but it can be harder to know when you’re too tired, or too sick. And sometimes you just want things DONE. (This impacts both my ADHD working till stupid o’clock to be finished, and my autism wanting to achieve THE PLAN.)

But sometimes writing or editing is worse than not doing either. An extreme case in point, is when I put down my novel for around seven months in 2022. I had long covid, and my brain fog was BAD, as was my memory. I knew that all I would achieve was creating consistency errors and adding a million typos to a book that needed mostly just needed proof reading. So I spent WEEKS wanting edit, and not touching Secrets of the Sorcery War. I didn’t do the final edit until it wasn’t HARD/ EXHAUSTING or even too tired anymore.

If you feel like doing something bookish but are struggling to write, maybe just re-read and make some edit notes. Or brainstorm ideas for future scenes. Write a short tory or a poem instead.

DON’T force yourself to write. If I’m telling myself I should do x, it normally means I‘m too fatigued. I’m not on social media because I’m being lazy; I’m on social media because that’s the most cognitively taxing thing I can manage at that time. And that’s ok.

Set Realistic (and flexible!) Writing Goals

With ADHD, I might have the whole day free to ‘focus on writing.’ My goal may be to spend 3-4 hours writing. Or to write or edit one to three chapters. However you find most effective to measure your goal (by word count, chapter, time period etc), being realistic is important. We don’t want RSD types beating themself up if they fail to meet the goal and autistic writers unsettled because the goal is THE PLAN, and the THE PLAN not happening is unsettling. Or ADHDers thinking at 1am, “Oh dear! I didn’t do the plan. I’ll just stay up till 4am and binge write to finish it.” (Yes, I’ve done option 2 and 3 MANY times.)

So try and set a goal that takes into account how much brain power, focus, energy and time you have that day. Consider setting a goal for the week, fortnight or month (especially if you’re chronically ill and struggling to keep your fatigue levels down.)

With flexible goals like my goal to finish a round of edits by the end of this month *crosses fingers!*, you don’t need to beat yourself up for not writing on days other stuff came up. You don’t have to worry about forcing yourself when you’re not up to writing. You’re setting yourself up to make the most of days where your body is in good shape, your brain is on board and you can make progress. And you -ideally- have days to spare, relax/ rest. for ‘life’ to happen.

When To Take Breaks

I used to write for around three to four hours straight. I’d want to write longer, but I’d get to a point where everything I recall about the story start melts out of my ears. I now know this is ‘cognitive overload’. Its a point where my brain can neither take in nor hold onto information. It used to be my cue to take a break.

I’m guessing neurotypical writers take breaks because they feel tired, not because their capacity to cognitively function is failing. I know this is HARD if you’re an autistic person who doesn’t think to take pain killers unless someone hit you in the head with a shovel. (I exaggerate, but we can be terrible at noticing how much pain, hunger or thirst we’re experiencing.) Or if you’re so hyper focused, or ADHD distracted that you don’t have a clue what your body is feeling.

But try to notice when your eyes get tired. When your posture slumps in your hair. Be on the look out for when you want to keep re-reading, because you don’t have the energy to write or edit new things. Try and notice when your thoughts get blurred, or you’re starting to have trouble keeping track of things within the story. If you’re prone to not notice hunger or thirst; know when you last ate a meal. Keep an eye on the clock. If its been a few hours; its probably time for a break!

Cognitive Needs: Writing Process

You may likes to plan and organise and make and compare story notes. You may be terrified of a blank page and need a chapter by chapter outline to populate that page with words. Or you may need only a vague idea in your head and off you go, pantsing all the way! Or something in between.

When it comes to writing process; what does your brain need to enable it to construct a story on a page? Some character/ world building/ plot notes written down? Notes in your head? Vague ideas?

If scenes come to you at random and you want to write out of order; do it! You need to keep re-reading because you’re making it up as you go along and otherwise forget where the story is going? Do it! If you’re a perfectionist who gets hung up on word choices and who will spend hours line editing a scene you’re later going to delete; DON’T edit as you go. As with writing, when editing; find what process works for you and your brain!

Cognitive Needs: Editing

If you have autism or ADHD, or are prone to brain fog or have any cognitive challenge, I very much think editing every single aspect of your writing is a recipe for cognitive overload. I strongly discourage you from editing every aspect of your writing at once. Though which elements of the writing it works for you to edit together or separately and when will vary.

I find my first and second drafts are about fully developing the characters and plot. Draft three tends to add depth to characters and character relationships/ interactions. Details that bore me and are info overload on top of characters and plot, like scenic description, dialog tags showing character emotion etc, come in a separate round of edits. I do a separate edit for consistency errors, eg. noticing that I said Amon was from Bellaria in chapter 4, and from Terriah in chapter 15.

Proof reading (which may include sentence level edits, eg. breaking long sentences into shorter ones) is my final ‘edit’ of the whole text. Then I check chapter numbering, because my other edits tend to delete, merge or add multiple chapters and fixing chapter numbering while restructuring chapters is cognitive overload. So I leave it till last to check there’s only one chapter 16, not three, and there is in fact a chapter 15. (Yes; edits of Walking the Knife’s Edge had exactly that problem!)

Which details are info overload, or may bore you and slow you down? What can you edit as you go, which things do you need to edit for separately, and what needs editing last for you?

Neurotypical VS. Neurodivergent Betas & Editors

Once you’ve done the writing, I hope you’re seeking feedback to help you get out of your head and view your story from the perspective of a reader who knows nothing about your characters or story world. This is where, as a neurodivergent writer, you can hit some snags.

I’ve had a few beta readers tell me there’s ‘too much internalisation.’ That “real people don’t think so much”. They “talk more and show their feelings more by their actions in the scene”.

The disconnect is the beta readers in question were neurotypical and they were speaking about ‘real neurotypical people.’ Whereas my main characters tend to be neurodivergent. My ADHDers will naturally notice loads of things and make lots of connections in their heads, faster than they can talk.

My autistic characters (a few in Ruarnon Trilogy are AuDHD) do similar, and logically make additional connections. Then they’ll draw upon their observations and logical deductions, and draw conclusions. And they will rehearse conversations in their heads before saying things out loud. This is because I as a neurotypical person do all of the above, so that is the kind of autistic and ADHD person I tend to write.

Neurodivergent Presentation

Don’t get me wrong. I’m not saying, “Discard all advice from neurotypical betas or editors about ND character rep.” I found, with my first neurotypical beta reader, that Ruarnon could be themself a bit more with their actions and what they said in the scene. And those edits were likely more satisfying for neurotypical readers.

But in some cases your character will not say what they think, or show their feelings openly. For example, my main character in Sythe Series, Rarkin, is traumatised, autistic, emotionally repressed, untrusting, and DOES NOT want to display his feelings or discuss his worries with anyone he doesn’t trust with his life. (I love writing Rarkin; he’s got so much room for growth!)

In a lot of situations, writing Rarkin doing anything other than crossing his arms and glaring, or physically tensing would be writing him inauthentically. The only way to understand the insecurities he’d rather die than talk about, his darkest fears, deepest worries etc is to write him in first person, and narrate his thoughts. Its crucial to representing him authentically. Again, he’s not inclined to just share his observations, connections or conclusions about things that don’t add up in his work for Sythe. And those observations are plot-relevant and need narration. Narrating his thoughts is crucial.

Which thoughts won’t your main character say out loud and why? What feelings may they hesitate to show? When? In other words; when does authentic rep require you to narrate your characters thoughts?

Show Don’t Tell. Or tell?

A neurotypical writer saying, “Show your characters feelings on the page” may be the common (in my opinion too often uncritically applied) advice ‘show don’t tell.’ You may receive the advice, “Don’t tell us your main character is autistic, show it!”

I’m all for showing it. That’s part of giving neurotypical readers insight into life as an autistic, ADHD, anxious etc person. Its part of the power of empathy reading can build. But when it comes to your character’s identity; remember that ignorance, personal experience and related reader bias can come into play.

I once had a review saying Ruarnon’s nonbinary rep could be ‘more subtle.’ True, but why would I aim for subtlety when that would create enormous space for cis readers to cis-wash my nonbinary character? What’s the point of writing a diverse character if you’re going to let people deny that character’s identity? Whether because of ignorance, or they’ve never met a person like that, or they haven’t recognised meeting people with that identity, or because of bigotry; I tend to explicitly state character neurodivergent and queer identities. (Both of which have alternate world names in Sythe Series).

I’m not going to be so presumptuous as to tell you how to write identities (even if its one we share). But I mention the above as I think considering the possibility of people, out of ignorance or prejudice, erasing character identities, is something authors need to be mindful of, especially given the politicisation of some identities in politics and the media.

Showing Feelings Resource

Where it is appropriate to have your character outwardly showing how they feel, and like me you’re artistically oblivious to posture, gestures, facial expressions etc associated with that feeling; get the Emotion Thesaurus. It will help you write external showing of a range of emotions to other characters, and describe sensations inside the body that -if you’re like me- you’ll also be oblivious too. In other words, its a great tool to help you show emotions, especially your own awareness of how those emotions present is limited.

I Think I’m Neurodivergent

Engaging Readers (of your novel)

Writing Neurodivergent & Disabled Characters

Chronically Ill & Neurodiverse Guide to Protests

Low Spoons Travel With Autism & Chronic Illness

July 17, 2025 / Elise Carlson / 0 Comments

My most delayed thing after long covid in 2022 was planning to travel. Navigating with autism and ADHD alone can be overstimulating, tiring and frustrating. But with a Fibro diagnosis, I now have to plan not only for autistic sensory needs and ADHD challenges, but for low physical energy, high risk of chronic fatigue and pain. So whether you’re travelling as or with an autistic person, ADHD person, or someone prone to fatigue and pain, I’ll attempt to unpack the factors I think you need to consider to minimise stress, fatigue and pain and to maximise comfort on your trip.

Sensory Challenges

Road Works, Construction & Obstructions

As navigator and driver, for me navigating unknown roads with roadworks is like navigating with one eye blindfolded and someone poking me repeatedly in the arm. My brain processes a row of cones, construction workers in their fluro clothes, trucks and other equipment as ‘big mass of stuff.’ I don’t want to look at ‘big mass of stuff’ because its overstimulating. So if the entrance to the venue, or my turn is next to or beside, behind or otherwise close to ‘big mass of stuff’… I struggle to process said venue/ turn’s existence.

I will miss the turn, because I’m so busy juggling not being overstimulated with not crashing into traffic moving at a different speed and direction, that I have zero processing power to perceive the second road. I’ll walk right past the entrance because I don’t see an entrance, just ‘shit ton of visual info, brain is jamming, look away!’

Obstruction Management Tip 1: Reduce Stimulation & Pressure

To locate the venue when roadworks, construction sites or other obstructions are present, I suggest navigating as near as you can by car. Then park the car. Now you don’t have to worry about crashing, so you can consult your phone and compare it to reality under less pressure. If you have to turn back into traffic and drive further; that’s fine. Its better than crashing. Its also better than a verbal argument with your navigator because you’re visually overstimulated and stressed.

Obstruction Management Tip 2: Reduce Stimulation & Pressure With Help

If your brain is already jammed with sensory overload, or fogged by covid, fibromyalgia or other condition, and you can’t connect your phone’s navigation directions to geographical reality… ask someone on the street. Or a customer service person in a shop.

Sometimes our brains fail us (I’ve navigated with moderate brain fog, moderate fatigue and severe ADHD and could barely navigate a supermarket, let alone New Zealand.) Don’t be hard on yourself, don’t persevere if your brain will not co-operate or is otherwise being an arse. Just ask someone else when its clear reality, your map and brain are not co-operating. This will save time, frustration and spare you the exhaustion of doing something very draining, because you’re attempting it while cognitively and or physically impaired.

For advice on minimising visual overstimulation at home, see this post.

Do You Have the Right Travel Companion?

To the able bodied, neurotypycal reader, if you’re travelling with someone who struggles with navigation/ overtimulation, and you struggle to be patient with that; I suggest don’t travel together. There are too many factors with the potential to cause tension, stress and frustration on both sides. If you don’t understand and or can’t be patient with the other person’s struggles; you’re likely making a challenging situation worse.

To the neurodivergent/ disabled reader, if you suspect your travel companion(s) do not understand why navigation is so difficult/ frustrating/ stressful for you; can you manage better on your own? I often travel solo, so I KNOW its more work. But depending how much strain travelling with a companion puts on you, is it ultimately less stressful/ less exhausting to travel solo? (You could just meet them at your destination.)

Navigation Communication Challenge: Noise

If you’re travelling with an autistic person, please bear in mind that we can hear you, and the conversation next to and behind us, and birds chirping and traffic and car horns and- If you are travelling with an ADHD person, they may be listening to you, then that song they love pumping out the window of a passing car, or something funny the person behind them said.

Communication Tip: Seek Quiet

For autism, be prepared to step into a quiet laneway, shop or somewhere less noisy, so the autistic person you’re speaking to is processing what you, and no one else is saying. We can’t receive the message ‘lets go into that museum’ when its competing with ‘(insert lyrics),’ ‘Mum I want an icecream!’, ‘Hi Steve!’ Bang, thud thud, DRILLL! from the construction site.

So to give an autistic (or ADHD) person the best chance to hear what you’re saying about where to go next; say it somewhere quiet. Turn off the radio. Ask the back seat passengers to stop speaking when a passenger is giving the driver directions.

Minimising noise makes audio directions or suggestions easier to access and respond to. It also saves you having to repeat yourself umpteen times every time you want to say, ‘I need to go to the toilet first.’

Sensory Overload

City’s are fun. They have buildings from many eras, and people from all over the world moving through their streets. They’re also busy, noisy and jam packed with visual information. I love walking city streets, listening to foreign accents, and taking photos of historic buildings. But as an AuDHD person; I NEED balance in my site seeing. I DO NOT WANT to site see in a busy, crowded, noisy city multiple days in a row. There comes a point where every hour I get tireder, more overloaded and more easily frustrated. Where city site seeing has become a tiring struggle to process ‘big wall of sound and visual info overload’.

Site Seeing V.S. Sensory Need Balance Tip

My favourite way to let my overstimulated brain and tense body relax, is to punctuate loud, crowded city site seeing with quieter, peaceful breaks. For example, spend 30 mins or more wandering a state library. Spend an afternoon at the zoo, or a morning wandering the city’s botanic gardens. I love gardens and animals, and tend to visit at least either in every city. I find it makes for calmer, more relaxed, more enjoyable travel.

View through grubby windscreen of a bend lined with protective metal fence, right pointing arrows, pretty gum trees and green slopes down to pale blue and cloudy horizon.

Avoiding ADHD Time-Fail Tax

Last year I navigated New Zealand’s North Island with moderate brain fog, moderate fatigue and severe (undiagnosed and unmedicated) ADHD. My biggest learning was; do NOT book morning anything unless staying within a 15 minute drive of that activity. I was one hours drive away from one activity, gave myself two hours to get there and still missed it. My ADHD got distracted, and missed a turn. Then I lost track of time, and drove 20 minutes beyond the turn before realising I’d missed it.

ADHD Booking & Time Tips

Use a Physical Calendar, with days of the week and dates labelled to write bookings on manually. (Days and dates DO NOT correlate in my brain and a device offers too many distractions. So I have an A4 weekly calendar notepad and its a huge help to my school holiday and travel planning.)

2. Dates: double check the month, year and 24 hour timing when you book. (Yes, I did drag my family to the air port 12 hours early to see me off the first time I flew to England. Better 12 hours early than 12 hours late!)

3. Timezones: check your device for local time before you plan your next step. Especially before you go buy food at an airport. (Yes, they may refer to flight number but not destination when changing your gate just before boarding. And not page you to the new gate when you don’t board on time).

Tours and Accomodation Tips

Morning Activities: Only book a morning anything, which doesn’t allow for mis-navigating the countryside, if you’re staying a SHORT distance from the morning activity.

Extra Time: If your drive is theoretically 30 minutes, give yourself AT LEAST one hour to get there. (To allow for factors you forgot to consider that could delay you, like traffic, road works, finding a car park etc.)

If there’s one thing you really want to do/ see, plan your trip so if there doesn’t end up being time for it today; you’ve got time tomorrow. Flexibility was essential to my last solo, unmedicated ADHD trip!

Low Spoons Travel (Pain/ Fatigue/ Chronic Illness)

I’ve just come back from a road trip with my mum. I put my back out on day one, just before we got in the car. Constant back pain quickly became fatigue. It mean difficulty getting in and out of the car and difficulty walking. It meant I burnt through energy quickly, and got tired and frustrated swiftly. These latter are things I have to be aware of all the time, because I have fibromyalgia, and that (permanently) predisposes me to brain fog, fatigue and chronic pain.

Low Energy Management; Snacks

Normally we try to cut back on snacks because we’re eating too much period, or too many calories. This DOES NOT apply to me when I travel. On my recent 9 day road trip, I didn’t just need breakfast, lunch and dinner. I either needed a substantial breakfast, lunch, afternoon tea and dinner, or breakfast, morning tea, lunch and dinner. Any one big physical activity, like an hour long walk, needed to be followed by eating and drinking. I might not notice I was hungry, but a meal made me feel better. Food and drink as fuel run out faster for me when I travel.

Low Energy; Pace Yourself

Even when my back recovered on my road trip, I still had to pace myself. If the slope was steep, or there were too many stairs, or I walked for longer than an hour, a flare of burning back pain and or fatigue (due to fibro) were likely. (When I say fatigue, my feet/ legs/ lower back feel A LOT heavier than usual, like I have to peel my feet off the ground and actively fight gravity to take each step).

Low Energy; Rest Breaks

What if I wanted to spend two hours walking around the botanic gardens/ nature trail/ city centre? This happened in Adelaide recently. I was able to walk for several hours; mostly because in the middle we sat at a cafe for a good forty minutes. I sat in a chair with proper back support and sunk into it, letting my body recharge. (And used this as the snack and drink recharge mentioned above). After that sit down; I could keep walking.

Another option when travelling solo for me is that with my seat adjusted to support my back sufficiently, sitting in the car driving helps me physically recharge.

Low Energy; Mobility Aids

The thing about invisible illnesses is you can’t see the bastards. Vision impaired people can get glasses, and hearing impaired people can get hearing aids. But do people with fatigue or chronic pain need mobility aids?

This is a conversation I didn’t have with my doctor, not when diagnosed with long covid, or fibromyalgia. But with back pain from putting my back out, my mother, having her own back issues, knew I wasn’t able to walk. So she did some research, and found that walking polls can provide physical support, while also helping a person build their core body muscles. (This article is aimed at hikers, but consider how more even distribution of your weight and the strain of making it walk can aid low energy movement.)

My mum bought me walking polls in Adelaide, which I used on nature trails. I found them especially helpful to reduce the strain on my body and my proneness to pain and fatigue when walking uphill, and up or downstairs. They were also great for longer walks, where I wanted to go further, but was tired and or fatigued.

So if you’re prone to chronic pain or fatigue, I suggest discussing mobility aids with your GP.

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Minimising Anxiety: Foreknowledge

Even if your companion knows the details, and you’re not normally prone to anxiety; a protest is a good event to minimise anything that might cause anxiety at, especially if you’re neurodiverse. Before you get there, I suggest checking where the protest is, who organised it, what format it takes etc. Do what helps calm us autistic people and arm yourself with foreknowledge of who will be where, doing what, when and how.

If its a type you haven’t been to before (or your first protest); ask around. Get other people to tell you about their experiences to help you know what to expect. A few times in unfamiliar contexts or places recently, I’ve found myself rehearsing what I know will happen, or steps I will take. This has helped me to regulate, remain calm and feel in control in an unfamiliar situation.

Company & ADHD Support To Arrive

A lot of how I’d stay calm, not stressed and not overwhelmed by the crowds comes down to this; try not to attend events alone. The presence of at least one person I know helps me with lots of things.

For a start, I might have trouble reaching the protest. I may be feeling nervous. And with my ADHD tendency towards distractibility, especially if I forgot my meds that morning, its easy to miss my train stop. Its also easy to get streets mixed up, turn to soon or read my map wrong (yes with phone navigation).

Travelling with another person who takes responsibility for navigating takes pressure off me. That alone helps reduce my stress and anxiety levels, and gives me a calmer arrival to the protest.

Company & Preventing Accidents (due to sensory overload)

When you reach the protest, people and signs everywhere and maybe helicopters in the sky, its easy to get distracted or overloaded with sensory information. At Invasion Day I was so distracted (or overloaded) with processing visual sensory info of the crowd that I nearly tripped over concrete bordering tram tracks, having not perceived/ processed it.

Crowds are an information processing challenge for people with autism and or ADHD. So its a good idea to ask your companion(s) to keep an eye out for trip hazards, help you spot them and to explain that you’re likely to overlook them. Its also a good idea to watch out for the crowd parting around obstacles ahead. Had people not stood on benches we had to walk around at Invasion Day, its possible I would have bumped into them too.

Comfort & Sensory Needs

I was lucky my friend was aware I’m nervous as an immunocompromised person of being hundreds or thousands people who could have a respiratory virus that could put me in bed for weeks. This made her aware of my need for personal space and prompted her to find it. And personal space reduced my feelings of being overwhelmed or stressed by people pressing in around me on all sides.

Stand/ Sit Near A Wall

The best space for a neurodiverse or chronically ill person is near a wall. No one can stand in the wall, so you’re guaranteed space on that side. And people don’t tend to pack closely together before the wall. And if the wall is by your side; half the crowd is behind you and you can’t see them. This gives you less likelihood of catching anything from anyone (like the N95 I assume fellow spoonies are wearing). And it reduces the sensory input and distraction of the crowd for autistic people and ADHDers.

But the most important thing about walls for anyone prone to fatigue or pain from prolonged standing is physical support. The Invasion Day rally began with two hours of speeches. I barely managed to stand through the first ten minutes (and I wanted to, because Uncle Garry Folely was speaking and I wanted to show him that respect). I could only stand that long because I was leaning my back fully against the wall and it was relieving my legs of half my weight.

When standing became too much; I sat with my back leaning against the wall. I had space to sit comfortably there and to change my position as needed. You couldn’t do that in the middle of the crowd in the middle of the street.

Company, Sensory Overload & Autism Support

Both my parents are autistic and dislike crowds. I think its the novelty and variety of people that my ADHD enjoys about them. My autism doesn’t mind them, but even after a family Christmas I’m TIRED, happy to sit alone and barely speak to anyone for hours. Attending a protest march with hundreds (especially thousands) of people gives me the same weariness. I think its the exhaustion of so many people, clothes, colours, faces, me noticing ALL of it and the energy that takes to process.

Crowds are massively overstimulating and being in one can feel overwhelming. Again, this is where being with at least one person can help. If I’m overwhelmed by all the people, I can focus on the person who’s my company. I even found talking to that friend during the latest march made it feel like it was just us walking down the street. It made me feel MUCH MORE comfortable.

Focusing on the back of the person in front of me or the sign they were carrying, instead of the entire crowded street ahead, also helped me feel less overwhelmed.

Anxiety/ Regulation Aids

As teachers, we know the power of a fidget to give that ADHD kid the stimulation/ dopamine hit they need to focus. We also know the calming benefit of regular, rhythmic movements for heightened and autistic children. Guess what? What helps children calm and self regulate can help adults too.

I didn’t bring fidgets to the Invasion Day speeches, but I was tapping my fingers on my knee to a regular rhythm. Holding a small, discrete fidget could have fulfilled my restless ADHD need to move, even while sitting listening for an hour and fifty minutes. Were I feeling anxious/ overwhelmed by the crowd; again a fidget involving repetitive, rhythmic movement could help calm me.

Mobility Aids

If you’re physically disabled and or hyper mobile, you may already have mobility aids. As a chronically ill person who recovered from long covid only to realise I still had fibromyalgia; I stumbled through chronic pain and fatigue. At work I mostly sat down as often as possible. At home I alternated being on my feet and moving with sitting and resting. But at a protest march its likely you’ll be on your feet for quite some time. So I bought a walking stick, which I’m most likely to use at protest marches (for now).

The Invasion Day march crowd moved too slowly for me. Sometimes my friend and I could step off the road onto the footpath and move at our own pace. But sometimes we couldn’t and like prolonged standing, prolonged slow walking is bad for my fatigue and back ache. For the last fifteen minutes, having a walking stick to lean on would have helped minimise my fatigue and back ache.

Final Note

As we’re conscious of in teaching, its hard too care for others if you are struggling. So try and ensure your comfort as best you can at protests (and in crowded spaces generally), so you can focus your energy on resisting whatever shit your country is/ is at risk of getting badly wrong.

Disability Community

It might seem odd starting with community when this post is mainly about developing awareness of your condition and potential issues navigating medical professionals. But when (to everyone else’s knowledge) you’re the only person you know who, in my case has; ADHD, autism, Fibromyalgia and in 2022 Long Covid; community is important.

This is especially true if you weren’t born with a disability. If, like me, you were just living your life, in my case running 4km multiple times a week, then one day you could barely walk, breathe or think (this is me from able-bodied to Long Covid). For chronic illness later in life, and I imagine any disability resulting from an accident or degenerative disease, its a BIG adjustment. And suddenly a major impact on your life falls outside the knowledge and understanding of most people in it (perhaps everyone you know). That’s where community comes in.

Disability Community- Get One

I learnt a lot about Chronic Fatigue limitations and managing my long covid from 2022 Twitter’s Disability community. I’m now learning from, connecting with and enjoying speaking to people on Blue Sky’s ADHD & Autism Feed, Neurodiverse Feed, Chronic Illness and Disability Feeds. These are totally informal round ups of individual people’s posts, which make it easier to share experiences, complain, commiserate, celebrate with and ask questions of people who ‘get it’/ us.

When I first realised I had Long Covid, it felt less scary seeing that others were in the same boat. This was a new illness, the medical profession had only just begun scratching the surface , no one I knew in real life had the faintest clue, but other people were suffering from it. Other people were living with it. Seeing their posts and reading articles encouraged me that we would find our way. (Took me 2.5 years but I got there –cutting back to part time work was the KEY).

Reading ADHD traits in other people’s daily lives was also validating for me as I sought an ADHD diagnosis, and it helps me feel connected now. Meanwhile seeing what other’s say about how autism impacts them and how I do and don’t relate to other people with autism is also helping me develop my self awareness.

For all four all four types of disability I’ve personally experienced, community has helped. I recommend seeking it on your choice of social media by searching relevant hashtags/ keywords. If relevant, you might want to seek out online or local formal support groups as well.

A Good Doctor

I know, they’re so hard to find —especially in rural areas. And if you have multiple disabilities, there’s the issue of finding a doctor who competently and open-mindedly supports you in managing them ALL. And who does so without being skeptical of one’s existence or biased toward misdiagnosing the other one(s).

For fellow spoonies, there’s also the issue of finding the energy to find a good doctor, if yours isn’t fully adequate. And there can be the need for a doctor who understands the links between conditions. For example maybe that woman doesn’t ‘need’ antidepressants and maybe her anxiety isn’t random, maybe she (and the world) need to adjust to her having autism or ADHD, or both? And maybe her back pain isn’t muscular, maybe its stress from the strain of the above?

Sure, this is just my observations as a person with only personal and second-hand knowledge of such things, but the more I learn, the more it seems your mental, emotional and physical health are interrelated. That any one of those three having an issue can stuff up one or both the others. So if you’ve got multiple ongoing disabilities, you NEED that good doctor who gets the BIG PICTURE for all diagnosis and relevant treatment/ management reasons.

My Doctor Wasn’t Good

I thought I had a good doctor. He listened, he was reassuring, he made me feel comfortable about some other issues that could have been quite serious, but turned out not to be. Then I got long covid. He got me to do standard medical tests, like bloods and an ECG to check my heart ect. When standard tests did not indicate standard (pre-covid) medical conditions, he handed me a survey to ‘explore other options’. Said survery basically asked ‘are you depressed’? in ten different ways. No, I wasn’t depressed. But having my GP try to misdiagnose my obviously physiological illness as depression did cause me anxiety about finding treatment for unknown condition.

He Had to Go

At this time I was fatigued, in chronic chest and back pain and brain fogged. I was teaching full time and very low on spoons. But I was lucky. It was 2022. I knew scientists were only just beginning to study, research and learn what the bloody hell long covid is and what it does to the human body. I knew many doctors could still be very ignorant of this.

But I hadn’t expected to come up against prejudice blocking my path to diagnosis. Luckily my doctor let slip enough for me to suspect that he had long covid, and didn’t want to admit it. And that that bias was compromising his judgement in diagnosing me. It was very clear I needed to walk away. Friends and my mother, whom I spoke to when I had the spoons, backed me fully and I felt empowered to seek a new doctor.

My Experience of Medical Prejudices & Biases

Enter doctor two. Consultation one, my most troubling symptom (which she mainly wanted to hear about, as opposed to symptoms which clearly pointed to long covid) was chronic pain. So, despite my insistence that my mental health was good and depression made zero sense, she prescribed me valium. She pretty much tried to convince me it was depression. One’s a coincidence, two’s a pattern.

This is how I learned there are doctors who prefer to diagnose based on the conditions they personally are most familiar with. That some will ignore any symptoms you name that disagree with their diagnosis (I didn’t have the spoons to test it with doctor two, but for doctor one this was certainly the case). This is when I became aware of doctors who misdiagnose physiological illnesses like long covid and Chronic Fatigue Sydrome, as psychological. Maybe because depression is more common, or more in line with their professional experience, personal bias, whatever. It didn’t help me.

How I Found the Right Doctor

As I said, I was low on spoons and not truly quite ready to accept that this time I knew best, and two doctors didn’t. I took the valium, got home, got angry, threw it in the bin and turned to friends and my mother. Comments from my mother like “but you never take pain killers” really helped me see beyond doubt that this was BAD, physiological and I needed a doctor who understood.

Starting to understand I was fatigued and struggling to find good doctors, my mother got me onto Hot Doc. Its an Australian online booking service with filters that let me search for doctors in my city who specialise in chronic illness. I made an appointment. Doctor three let me talk —probably beyond what he needed to hear for diagnosis because he could see I needed to get it off my chest. Then he said, “That sounds like long covid. But you already knew that?”

Yep, got the one!

I was SO relieved to have a doctor who knew what he was dealing with (I was his fourth long covid patient). He could reassure me that having stumbled for four months on my own I was on the right track with fatigue management. He also have advice on balancing that and exercise, and bothered to test my iron and B12 (both were low) and got me on vitamin supplements.

When I recovered from Long Covid and still had pain and fatigue crashes —he knew Fibromyalgia was a possibility. He correctly diagnosed that and prescribed a pain killer that for the most part kep my chronic pain at bay. (This was while teaching full time. I now work part time and no longer need pain medication. I’ve learnt pain is my body saying ‘fucking stop and rest’ and working no more than two consecutive days a week now, I’m nearly pain free).

Patient Awareness

Medical Malpractice that Could Have Impacted Me

Having had two doctors fail me, I realised it was a good idea to do what little reading I could find the spoons for. At the time it seemed Chronic Fatigue Syndrome was as much a possibility as Long Covid. So when I came across articles about doctors whose outdated —not to mention medically discredited— approach to treating CFS causing harm, I read them.

Luckily Twitter (not yet completely destroyed or corrupted by Musk in 2022) still had doctors tweeting good resources. That’s how I learned about PEM (post exhertional maliaise). And some doctors acting on now discredited beliefs telling patients with Chronic Fatigue Syndrome to exercise, which makes CFS symptoms worse and can cause PEM. I also learnt of the myth CFS sufferers can ‘make themselves better by changing their attitudes,’ outlined and linked to Long Covid scepticism in this article.

By the time I saw my third doctor, I was ready to run away from anyone who told me to ‘exercise and work’ my way out of long covid. Ready to defy out-dated medical advice. Luckily, I didn’t need to. (Though interestingly, with Fibromyalgia, balancing my part time work week with exercise is proving my best defence against fatigue and chronic pain. This is perhaps because I was extremely fit before becoming chronically ill in my mid thirties).

Safeguarding Yourself/ Family

I know, the last thing you need when you’re managing one or more disabilities is safeguarding yourself against a medical professional whose judgement could do you harm. In a world free from racism, misogyny, transphobia etc, that would be easier. Its the last thing you need when when you’ve got a condition that really limits you physically and or emotionally/ mentally. I’m thinking particularly of early Long Covid patients told to exercise which further crippled them with PEM here, but in our imperfect world other circumstances may also apply.

But as I discovered with Long Covid, sometimes you’re unlucky and you’ve either got the wrong doctor, or the wrong doctor to help you manage your particular condition(s). So be aware of and on the look out for red flags.

Trust Yourself and Listen to Those You Trust

So should you feel a medical professional isn’t listening, that their advice is not helping, that their judgement is impaired by any form of prejudice; trust yourself. If it helps and is manageable, keep a record of your symptoms. Know how you were before treatment/ medical advice and after. Have it in writing so you can see for yourself whether treatment is making things better or worse, or which compromise is best. Back yourself up with knowledge of your body so you know when to say ‘no.’

Confession: between brain fog and ADHD I was shit at tracking my symptoms with Long Covid and initially just as bad with Fibromyalgia. But with the Fibro, my awareness of my own body, how much physical activity I can undertake, what kind and how often has been the single greatest factor in improving my quality of life. Similarly, awareness of my ADHD, particularly after I started taking meds, has helped me notice when futile to attempt certain tasks. Knowing yourself helps you help you, and helps inform that good doctor, to help them help you.

I hope you’ve mostly got access to effective, unbiased medical professionals who know what they’re doing. But the rarer and lesser known your condition, it seems the better and more necessary it is to hone your own awareness. And trust that awareness. And communicate it to medical professionals until you get one who listens, understands and work with you as you are are, not merely how they assume/ anticipate you to be.