It's Time to Throw Away the 'Coulda, Woulda, Shouldas' and Practice Radical Rest

When you're chronically ill you can't push your body the way non disabled people do. You have to learn to rest. There's few words more damaging to us than the 'coulda, woulda, shouldas'

Who’s tired right now? Who’s reading this article because they can’t sleep, they’re in pain or they’re ‘wired but tired’? I’m not afraid to admit that I frequently write when I’m in that state - because rest can be SO hard to come by when you’re dealing with complex chronic illness.

Unfortunately for us - the more we push ourselves the sicker we get. We are not the people who can stay up all night and then expect to have regular levels of function the next day. Lack of sleep and restorative rest can drastically alter our baseline.

We all KNOW this. We’ve experienced the setbacks and fallout from pushing our body to do something it clearly doesn’t want to do. We’ve been laid up in bed for days after denying ourselves the radical rest we need to maintain our health and function.

Why IS Radical Rest So Hard?

First of all - it’s boring. No one wants to lay in a dark room doing absolutely nothing. It’s not fun. More often than not we have symptoms that prevent us from sleeping - so we are stuck with only our thoughts spinning around in our exhausted heads.

It’s natural to want to outrun this. To jump on social media for a distraction, turn on the tv and numb the brain. The problem is - doing those things is NOT radical rest. You may be resting your body - but you’re pushing your brain. It will fight back.

Society conditions us to see rest as a failure. We value productivity at all costs. We give out attendance awards, we shame people who call in sick to school or work, we reward those who juggle as many things as possible. We say things like ‘I don’t know how they do it’ when we hear of someone who’s multi-tasking to the extreme. We praise them and secretly wish we could push as much as they do. We never stop to say ‘wow they should really rest more.’

We aren’t taught how to rest. We’re taught how to push. To hide our pain. To say ‘we’re fine’ when we are anything but. To plaster a smile on our face and pretend that we’re ok when we are actively causing ourselves harm. I wrote an entire article about how we’re conditioned to hide our pain - it’s a rallying cry to encourage all disabled people to stop hiding and show the world our true suffering:

All the Tears I Can Not Cry and All The Pain You Will Not See

Learning to rest - to really and truly rest - is one of the hardest things a chronic illness patient has to do. I would argue it’s right up there with mindfulness in terms of the most useful skills to help accommodate living with a severe illness - but it does not come easy. And that’s ok.

Photo by Sincerely Media on Unsplash

Image Description: Beige scrabble like pieces with green letters spell out ‘REST’ on a white background.

What Does Radical Rest Look Like?

It’s resting body AND mind. It’s turning off the smartphone, the computer and the tv. It’s shutting out any and all distractions and quieting your brain as much as possible. It’s honouring your limits and giving yourself permission to do absolutely nothing. No listening to music, no talking on the phone, no engaging on social media. Sometimes it even means no gazing out the window.

Any mental stimulus can become too much when you’re in a crash. That’s why many of us resort to laying in a dark room with noise cancelling headphones and an eye mask - we’re trying to shut out the world. If we don’t - our bodies and minds will shut it out for us.

Too often we think of rest only in terms of physical activity. When we feel a flare coming on we will often climb into bed or hunker down on the couch - elevate our legs, maybe grab a cup of tea and practice ‘self care’.

We’ve been inundated with instagram posts of people looking cozy curled up with coffee and a book or their laptop. Of others doing at home spa days or calmly chatting on the phone with a friend. Of people designing vision boards or writing blog posts in cozy pajamas proclaiming this is their ‘rest time’.

There’s nothing wrong with any of those activities - but they aren’t truly restful. Especially if you have chronic illness. You may be resting your body but you are actively pushing your brain.

I’m very good at resting my body. My cardiac issues often force the issue - I will faint if I don’t stop and rest when I get early warning signals. Laying down when needed, stopping any and all physical activity when my body screams that it’s too much - these things come easily to me.

Resting my brain has never come easy. I’m still trying to learn how to do it.

My brain fog can be quite severe - it feels like cobwebs have nestled in every crook and cranny - filling my headspace and making it hard to think through anything clearly. My thoughts spiral in a million different directions as I desperately try and cling on to one of them for focus and grounding.

I describe it as my scrambled egg brain - it feels as though my mind is literally on fire. Being rapidly cooked while jostled around like loose scrambled eggs.

I know it’s happening - yet I’m powerless to stop it. I almost always have the same set of warning signs.

• Ruminating on random things that aren’t important and don’t need to be thought about

• Running endless lists in my head

• Suddenly worrying about money and checking all my bills and online banking

• Thinking that I’ve forgotten to order a necessary supply and frantically scrolling Amazon

• Rapid fire posting on social media that isn’t up to my regular quality of writing

• Texting people so quickly they don’t even have a chance to respond

• Catastrophizing (this one is the worst isn’t it?)

I’ve identified the warning signs - which is generally half the battle - so how come when they start happening I can’t stop myself and just rest?

It’s Those Dreaded ‘Coulda, Woulda, Shouldas’

I propose - here and now - that those of us in the chronic illness community make a pact to toss the ‘coulda, woulda shouldas’ in the garbage and never look back.

Image Description: Kim Cattrell as Samantha in Sex and the City. She’s wearing a blue shirt and large pink earrings. White text reads ‘Coulda, woulda, shoulda.’

There are few words more damaging to those of us trying to adapt to life with chronic illness than ‘coulda, woulda, shoulda.’ They wiggle their way into your brain and torment it into believing it’s wrong to rest.

They drive a harmful inner monologue that often results in self-gaslighting - which in my opinion is more harmful than when others gaslight us.

Being chronically ill is hard - we are constantly dismissed, disbelieved and ignored. Frequently made to justify our need for rest, fight for medical care and endure horrible amounts of ableism and general disdain.

We face an uphill battle to be respected and treated with kindness and compassion when we interact with the world - we don’t need to have the same battle with ourselves. We need to be our own cheerleaders. Our best advocates. Have our own backs at all times.

My own war with the ‘coulda, woulda, shouldas’ looks a lot like this:

• You coulda had a better day today if you had just been smarter yesterday

• You woulda been more productive if you had just done this differently

• You shoulda seen this coming. You’re stupid. Why didn’t you prepare better?

• You coulda stopped this if you only tried harder

• You woulda had your article published if you focused more

• You SHOULDA known better. When will you learn?

That last one is the most damaging to my mental health because it makes me feel like a failure. Like maybe all my hard work towards managing my baseline is for nothing because it’s not working to prevent the flares. Like I’m not doing enough to keep myself safe and calm.

Image Description: A beige pug with a black snout is seen wrapped in a white fuzzy blanket.

It’s Not Helpful. It’s Never Been Helpful and it Never Will Be Helpful

I’m doing more than enough. We all are. The only reason we don’t believe it is because most of us have spent our entire lives being treated badly for being sick. Being told that we should try harder, push more, do this thing or that thing. We are blamed for illnesses which are outside of our control - and when you endure enough of that blame - you internalize it and begin to blame yourself.

Let’s agree to stop doing that. We did nothing wrong. We didn’t ask to be sick. No one signs up for a life of chronic illness. We didn’t create the ableist society we are trapped in. We didn’t choose the family that treats us badly or the people who refuse to acknowledge our suffering. We did nothing wrong.

I’m saying it twice to make sure it sticks - because I know I need the reminder. If I need it I’m sure there are other people out there who do as well.

Illness is not a moral failing. It’s not a punishment from God or whatever other rationalization someone gives you to explain why you are sick and they aren’t.

“Sick” comes for everyone eventually - some of us just experience it younger than others. Some of us are born sick. There’s no rhyme or reason to it - it just is. The blame must stop.

We are all doing the best we can - and that will always be more than enough.

I invite everyone in the community to share their best tips for radical rest in the comments - let’s help one another hone this valuable skill. If you’re currently in need of radical rest - close this article and come back to it when you’re ready. Don’t ever push yourself for my sake (or for anyone else’s).

Likewise if you’re struggling to rest, experiencing severe brain fog or PEM (post exertional malaise) - feel free to share those struggles as well.

We often believe that other chronic illness patients have it ‘all figured out’ - and I think we need to dispel that myth and share our wins and our losses. This week has been a big loss for me. I had to stop working on three articles that I had planned, I was unable to wash my hair (even with assistance), and I had a horrific meltdown in response to the scrambled egg brain that kept me awake for nearly two days.

It was awful - and the last thing I wanted to do was write about it. But after a few days of radical rest I realized that I’m not being my true authentic self if I don’t share the good AND the bad. If I don’t tell others what I struggle most with. If I don’t encourage the community to toss away the harmful inner monologues. To eliminate the ‘coulda, woulda, shouldas’ - and give their bodies what they need.