Chronic Illness: Lacking a Manual (Part 1)

1Chronic illness is hard.

Strangely enough, that is actually something that needs to be said.

In the first world we are trained to expect answers.  Honestly, I think that this training is part of why chronic illness is so hard to deal with – both by the people living with illness and by the medical professionals who attempt to help them.

The way things are supposed to work is: you go to the doctor, they give you an answer – maybe with an appetizer of tests and a side order of medication – but an answer, nonetheless.  Something that, if you follow instructions properly and give it some time, will fix the issue you came in with.  You will get better.

But that’s not how chronic illness works.

And even the most logical mind can have issues processing what ‘chronic’ really means when you attach it to the word illness and apply it to your own life.

And it’s not like we’re issued a manual 2 whenever we finally get our diagnosis.

Chronic is every hour of every day.  Chronic is knowing that no matter how good you feel in the current moment, one mistake in the careful balancing of symptoms/activities/mitigations/ medications…  and it will shift, sometimes with falling-off-a-cliff abruptness, down into an example of your worst day.

Even worse – sometimes it doesn’t even require a mistake.  Sometimes you can do everything right, and your body still rebels.

At the center of this is the fact that your body ends up feeling like a traitor.  Or, on really bad days – an outright enemy.  I’m not the only spoonie I know who has a tendency to anthropomorphize individual body parts or refer to their physical self separately from their conscious self.  Most days I use ‘bodyshell thing’ accompanied by a variety of adjectives – how colourful they are is dependent on its behavior on a given day.

"I'd like a refund on my body. It's kinda defective and really expensive"

You learn not to rely on it.

Which may not sound like all that earth-shaking a lesson, from outside of the experience.

From inside it can be utterly terrifying.

I know that not everyone learns not to trust people as early as I did.  In fact, there are a lot of people out there who may never learn that as a solid fact.

However, what you are taught is that you can always depend on yourself, even if everything else has gone into the compacter.  I’ve been to schools in two countries and a smattering of states, and that lesson was threaded through everything.

It is in our literature, it is in our entertainment, and it is part of how we approach medicine and being sick.

If we are strong enough, if we are brave enough, if we try hard enough – we can accomplish anything!

The hero walks across broken glass while bleeding from wounds sustained in the dramatic fight scenes that came before, and wins the day – without seeming to mind the messy bits so much.

The problem is sustainability.

When striving for a goal, rarely is it a 24-7 task.  You take the time to sleep, eat, rest and recharge.  Montage sequences generally leave that part out.

The hero’s injuries will heal before the sequel.

However, chronic illness doesn’t work within that framework.  Since it is always there, you have little option for taking your mind off of it for any length of time.  Many chronic illnesses also have a nasty habit of drastically complicating your ability to eat and sleep.

And as far as the image of the hero is concerned – we go back to the word chronic.  I’m sure most of those protagonists wouldn’t handle things as well if those injuries became an everyday thing.

Which means that in a society that has prepared you to treat illness and injury like a sprint, you have to shift gears into treating it like a marathon.

Additionally, you have to face the fact that most of the people you interact with in your day to day life will still think of illness as a sprint.

Which can be exhausting all by itself.

There are times when well meaning phrases do little other than make it harder to fight your own internal monologue.  Because why aren’t we better yet?  Why haven’t we managed to push our way through it all and function properly?  What is wrong with us that we are still sick?

So, for my fellow spoonies3 out there, try to be gentle with yourselves?

Because this is hard.

And while our illnesses are intrinsic parts of our lives, they are not negligible parts.  They add their own complete subset of tasks and responsibilities, on top of all the normal life stuff.

So, you’re allowed to be tired.  You’re allowed to have days where there just isn’t enough of you to go around.

You’re allowed self-care.

Possibly one of the hardest lessons to learn4, but one of the most important in learning to live with chronic illness.

Image and Art by @Likhain,

Series NavigationChronic Illness as a Caregiver: Don’t Burn the Whole Candle >>
  1. This post is about my experience with chronic illness.  If your experience is different, that is also valid.
  2. Would be nice, though, wouldn’t it?  One of us should write one
  3. The Spoon Theory is a concept created to help express the experience of chronic illness.  It suited so well that a lot of people with chronic illnesses identify themselves as spoonies.
  4. I’m still working on learning this one.  It is definitely a process.

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