Chronic Illness Part 2: The Daily Grind of Pain

Note:  This post is about chronic pain from my perspective and written through my experience with it.  I know that this will not cover everyone’s experience.  Additionally, there should definitely be content warnings.  Chronic life involves everything from PTSD to depression to tremendous anxiety to…

Chronic pain isn’t a single experience, or a single chunk of experience, or even something like a lens through which you view experience.

It threads its tendrils through every aspect of your life, no matter how simple those aspects once seemed.

It is part of why sleep is my least favourite requirement of any given day, why I have to plan like a general for the far-reaching campaign with the codename “Shower,” and why even putting on clothing is something I’ve had to change my approach to.

Image of a person in an old-style bathtub. The text above it reads "You don't know what fatigue is until you've had to rest after taking a shower."

It manages to be both terribly consistent – a constant everyday companion,  and distressingly random, in the wheres and whys and intensities.

It adds colour to your life, some that you will have never seen prior – but it can also bleed your life down to a monochrome so faded you are barely certain it is even there.

And it’s tiring.  If you’ve never suffered anything more severe than a sprained ankle – it is probably a little hard to extrapolate pain into a state of constancy.  Especially due to one of the most drastic differences between acute pain and chronic pain.

If you cut your finger chopping potatoes – it hurts, it is annoying, and it messes with your capacity to do basic tasks because fingers are involved in just about everything but…  you have an idea of how long that aggravation will last, how long you will be wincing at all the typos the bandage makes you accidentally create.

Trip over your cat, and twist your ankle because you were more concerned about not hurting the cat compared to mild injury for you?  The crutches are going to be a chore for a bit, but the doc says you’ll be fine in a few weeks.  There’s a timeframe.

There’s a light at the end of the tunnel.

A tunnel with train tracks in it, dark, lit slightly from the far end, where you can see the arch of the exit.

Until that light gets taken away from you, you may not even know it is there.

Because, let’s face it, pain isn’t fun.  Even what happens with a papercut or a hangnail when they get rubbed wrong or catch on something – it may be something that only takes your attention for a second – but that doesn’t make it an enjoyable second.

Its our warning system.  “Hey!  Hey!  Something is wrong here, you should probably have a look at it.”

So even the small pains are like a computer’s error messages: designed to irritate, and make you focus on the source.

But when you have a timeframe to deal with, you can mark it down as you handle it.  “Just two more weeks…” or “I’m halfway there.”

Like waiting in a line, or for a virus scan to finish running, or a roast to finish baking…  you know around when it is going to be over and done.1

An image of Yoda, with the text "Waiting, I am."

With chronic pain, you don’t.

Depending on what it is that is causing it, how you react to medication, and whether or not there are even options for relief – you may have a sick certainty inside you that you will never know a life without it again.

Which, believe it or not, is a pretty heavy thought to carry around in your head, no matter how deep you bury it.

For me, it can also take up a ridiculous amount of mental resources, and oftentimes I will not even realize it is happening.

Because you adapt, as best you can.  That’s what humans do, right?

Waking up, for me at least, begins an internal diagnostic.  If it is a morning when all four limbs are behaving, this mostly runs in background – something I do, but am only vaguely aware of – while I make that first cup of caffeine and try to begin to organize the day.  On mornings when one or more limbs are being recalcitrant, it is an active thinking process, as I try to figure out what HAS to be fixed versus what isn’t worth the effort.

It’s also when I sort out what I’m going to need to be careful about, and what I need to watch for.  If it is a particularly leg-iffy day I run through the layout of each room in the house, in my head, to make sure the locations of all the safe things to catch myself on are fresh for the day.

If it is a “normal” day I don’t give it much conscious thought after that.  I’ve been dealing with all of this for long enough that it doesn’t have to be.  Frankly, I wouldn’t want it to be.  It’s more depressing when I’m actively thinking about it.

But I can see it.

I can see it in the fact that my routes around the house will change, depending on what sort of shape I’m in.

I can see it in the fact that I’ll put on clothes differently, and my clothing choices will change.

I will avoid certain cabinets, eschew the heavier cookware and mugs…

Sometimes it means I have to regulate my breathing.  Breathe deeply and regularly enough to keep from hyper-ventilating and get that precious oxygen to my brain, but not so deeply that it feels like my lungs are being stabbed by wandering rib-bones.

Depending on the day and where the alarms are currently going off, I sit differently, I avoid things that might make me laugh (though still manage to partially enjoy them when they happen)…

…and when I inevitably miss a step in this elaborate dance of “don’t make it angrier” I feel like an idiot.

Even when I am fully aware that it might not actually have been anything I did or didn’t do.

And I know I’m not the only one.

It’s like the hyper-alertness that comes with PTSD – on a very personal, very micro-managed level.  You’re watching for signs of the Bad Things in your own body, those warnings you’ve learned to recognize in your own symptoms that indicate Something Terrible is about to happen.

Text reads: "Survival mode is supposed to be a phase that helps save your life. It is not meant to be how you live." - Michelle Rosenthal

It takes an astonishing amount of effort to not look sick.

It can’t always be managed, but we try pretty hard.

And I think there are a long list of reasons for this.

Part of it is societal training: you won’t be given more than you can bear, you shouldn’t bother other people with your problems, you need to be polite, you need to “man up”2

…  but that’s far from all of it.

For me, the larger portion of it is for myself.

Yes, I’m sick.  Yes, the shell I live in is pretty broken and non-functional.

But this isn’t going to change without some serious leaps in medical science.  Things that I don’t expect to see in my lifetime.3  And even if it does get figured out, with our current medical system – I don’t expect it to be anything I could possibly afford.

So – no light at the end of that particular tunnel.

An image of a person perched on a red bench, umbrella over them, in a deluging rain. The text is "Image waking up every day not sure if you can go to the store, take a shower, eat a meal. Chronic illness requires learning the balance btween surrender and fighting and no one even knows you are in a battle."

It comes down to a choice.  For those who suffer from chronic conditions that not-looking-sick is a Jenga tower of adaptations and choices, mental and physical coping methods, and a knowledge of the price that will be paid due to those adaptations and choices.

Managing to pull off a full workday where everything flows properly and you are on top of things may be possible – but the people who see you at work don’t know that when you get home making a cup of Ramen might be beyond your capability with what you have left.

And if you gauge it wrong, one proper normal day might wipe you out for a week.

As you might imagine, this process is tiring.

It’s also depressing.

There’s a lot of talk about “mourning a normal life,” and that’s no joke.

When you have to approach every potential activity in your life with a detailed cost benefit analysis – one that you know many of your friends and family members don’t have or can’t see?

You don’t want to have to say “no” so frequently, you don’t want to say “yes,” and then have to cancel, you don’t want to misgauge and have people have to deal with what happens when the pain breaks through your control and you become oh-so-very-vulnerable.

To be entirely honest, that’s not likely to be a scenario you want to deal with either.  It is fairly rare for people to have any idea what to do when someone is dealing with intense pain, and when experiencing it yourself, you are unlikely to have an easy time explaining anything.

It’s isolating, and not just in the sense that actual real live human contact and interaction can become so very complicated.

It’s isolating because of what it does to the inside of your head.

Because pain can make you grumpy.  Being tired can make you grumpy.  You can become more reactive.  You can lose social filters because pain processing needed the resources they’d been using.

And I, at least, prefer to keep my responses appropriate to the offense.

You may start to think things like “where I am right now no one would want me around anyway” or “I hurt too much to not accidentally be a jerk” or…

…  brains get pretty inventive with the litanies they will spout.  The human capacity for self-sabotage is mighty.

Even if you are lucky enough to have a decent support system, the combination of feeling like a burden and not being able to articulate properly the things you deal with can draw you into some fairly dark internal places.

And, as if this wonderful mental stew of pain, inadequacy, hyper-alertness, grief, and isolation wasn’t enough – you have to contend with the responses of other people.

This ranges from the ever-popular and ever-loathed, “You don’t look sick” to having to fight with medical professionals to be acknowledged as anything other than someone who needs psychiatric medication or is only seeking a high.

For many chronic pain patients if they had a dollar for every time they’ve been told a variant on either “you don’t look sick” or “have you considered that it is your brain that is broken, not your body” they might actually have enough money to pay their medical bills.

Being a zebra is frustrating.  4

I understand why doctors have the “hoofbeats mean horses” analogy drummed into their brains so thoroughly, but it leaves those of us with stripes out in the cold.

There’s a lot of harm done by that one simple assumption.

Because there’s a sense that you should trust your doctor.  There’s an expectation that they know more than you do, and that there has to be at least a glimmer of truth in what they say.  Even if you’ve been playing doctor roulette for years, and know that sometimes you have to educate them on your condition, there’s still just a hint of “but what if he’s right?”

And there’s a level on which it is tempting to believe.  If it is something going wrong in your head, maybe it would be more easily fixed.  It might take some intensive counseling and rewiring of responses, but it would be something more closely resembling a cure!

There’s a level of relief that cannot really be described when you interact with someone and they understand.  When the facts as you know them to be are accepted, integrated, and you can move on.

Image of an anthropomorphized sloth looking absolutely happy, with the text "when someone understands"

It’s a gift that the people who do it rarely realize that they are giving.

Because living with constant pain is a battle.  And it is one with no end in sight. The lack of easy access to consistent and appropriate medical care leaves you short on tools – and that isn’t even touching on having to fight for the medications and mitigations5 – that will actually make it easier to face your day to day life.

It is important to understand that when someone dealing with chronic pain does look sick – it’s because all of that experience in masking it, all of the practice in managing it, all of the adaptations we have worked so hard to make automatic…  they’ve failed us.

When you can actively tell that there is something wrong, there’s a good chance we are feeling overwhelmed with a sense of failure – and not just of failing those around us, but of failing ourselves.

Even better, there’s always the chance that those cracks in our coping processes will turn into great rifts, and we will end up in a space where there’s little that can be done beyond finding the least painful position possible, and perhaps something that doesn’t require very much effort on our part to distract the bits of ourselves that haven’t been completely subsumed by the pain.

There’s a special hell pain can place you where you cannot focus your eyes enough to read, and you wouldn’t be able to string thoughts and responses together well enough to do a book justice, even if you could get your eyes to behave.

For those same reasons of problems stringing thoughts and responses together, you can’t hold a decent conversation 6 – so interacting properly with people is mostly out.

For me the combination of Netflix and couch is not generally something I choose intentionally, it is more of a last resort.  “Watch” something familiar radio drama style, with touchstones of love and care – a favoured pillow, a blanket of the proper weight, a loved half to death teddybear – and an overprotective loving furrball or two7 – and try to weather both the pain and the frustration that I cannot “power through it” and manage to do anything more functional or interesting.8

Human hand sticking out from underneath a Great Dane.

It is amazing how bored those last fragments of your mind can get, and how quickly they decide to distract themselves with castigating you for not being enough, or for not being strong enough, or for being a waste of a life.

And this is where those gifts of understanding have their strongest effect.

If you have those memories of validations of what you go through, you can hold onto them during those really bad days.  You can use them to counter-sing the streams of self-recrimination and doubt.  They can help you to hold on until the “flare” (of whatever intensity and length) eases back enough that you can return to your more usual schedule of coping mechanisms and paying for them.

So, for those of you reading this who are not people who experience chronic pain, I hope this opens a useful window into some of what the experience of it is like.

For those of you who do – remember you are enough and you are a bad-ass.  There are days where the sheer act of deciding to face yet another one is a victory comparable to climbing Everest.  Don’t be ashamed of yourself for the days when it is hard.  Give yourself some time to rest and recover at your personal version of Basecamp without guilt – because what your pain does to you is nothing you should feel guilty for.

"Pain lets you know you are still alive" "Man, I feel so, so Alive right now"

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  1. I realize the greatly frenetic experience of watching Windows Time could break this analogy – but, work with me, here.
  2. One could write volumes about the toxicity of this phrase…
  3. Or, at the rate we’re going, before the human race engenders its own extinction.
  4. I’m assuming facing a zebra is also frustrating, especially since our access to medical care is often limited, and Emergency Rooms are not designed to deal with non-emergent situations.
  5. Ranging from adaptive clothing to mobility aids to helpful supplements to the right kind of physical therapy to…
  6. Though depending on the type of pain loopiness, sometimes you can be amusing in the attempt, or so sayeth Mister Tea’s responses to some of the randomness that comes out of my mouth sometimes.
  7. As you might guess, Raubahn excels at this.  He is a large (not meaning just size here) comfort to me when things are terrible.  He and the cats team-up sometimes.  It is very cute.  It is also immensely helpful.  My really terrible days are easier to cope with now that he is a part of my life.
  8. You can imagine my surprise and chagrin, and Mister Tea’s amusement – when he had to explain to me what other people mean by “Netflix and chill.”

4 Replies to “Chronic Illness Part 2: The Daily Grind of Pain”

    • How do you utilize salts in the shower? I’ve used them (in combination with herbs) for baths, and that’s helpful, but… Also, I may have to take a look at your site. I know my current work set-up is not particularly … friendly, as far as ergonomics go.

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