Have you ever done a task analysis before? Try it - next time you grab a coffee, watch the Barista. Write down all of the steps involved as you go. What we take for granted as "making a coffee" is actually a really complex series of movements and tasks. For us and the Barista, it's automatic. But... what if it wasn't automatic anymore?
What if your fatigue was so bad that every time you had to get out of bed and get dressed, you had to think about every single movement?
Position arms. Brace. Twist. Sit up.
Put the right foot down.
Then the left.
Up, and out.
To the cupboard - reach for the shirt.
Another movement - gripping now - take it off the clothes hanger.
One arm up, then the other...
And on it goes.
You haven't even got the shirt on yet.
What Does it Mean to Have an Invisible Illness?
"But You Don't Look Sick" is a website by Christine Miserandino, based on a phrase that many people with an invisible illness have heard all too often. Christine's "Spoon Theory" (more on that soon) got me thinking about what life can be like when you're unwell on the inside - but others can't see your fatigue or pain.
Millions of people are affected by invisible illness, and these are a few of the more common types:
- Multiple Sclerosis
- Chronic Fatigue Syndrome
- Chronic Pain Syndrome
- Complex Regional Pain Syndrome
I could never pretend to fully understand another person's deeply personal and unique experience of a chronic, invisible illness. But something "clicked" for me when I came across Spoon Theory. I feel like I'm closer to understanding what it means to have limited resources to do the things that "well" people (myself included) do without a second thought.
Rehabilitation Professionals need to understand this.
We are increasingly working with people who may never totally recover from their illness and its symptoms. We are increasingly working with people who are told that conventional medicine and treatment cannot help them any more than it already has.
How can we better understand their experience? What tools can we help them develop to do the things that matter to them?
Understanding Spoon Theory
Christine uses the analogy of a spoon to describe her experience of Lupus to her friend:
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew.
She then goes on to ask her friend to count her spoons - because being unwell means you don't have unlimited spoons.
Each activity = one spoon.
Showering that day? Spoon.
Brushing your hair? Another spoon.
Fast forward to dinner time... one spoon left. Will you spend it on making yourself dinner or cleaning up tonight? You have to choose.
Christine explains that living with an invisible illness and fatigue requires you to count and monitor your spoons. If you use too many, you'll have even less spoons the next day.
So, how are you going to spend your day? What matters? What will you choose? What will you give up?
How Spoon Theory Can Help Our Clients
As I read Christine's article, I couldn't help but notice what an elegant explanation of energy management she had written.
I've still got some work to do to truly understand how invisible or chronic illness can impact a person's identity, sense of self and their life. I have a feeling it's going to be a long journey for me. Perhaps the same is true for you, too.
But, right now (or in the near future), it's quite likely that you'll work with someone who has to manage their energy and fatigue.
Maybe they've been stuck in a cycle of "boom and bust" (going all-out on activities on a good day only to be totally exhausted by the rest of the week) and can't figure out if there's another way. Maybe they're still adjusting to the fact that they don't have as many spoons as they used to.
Could you help them figure out how to spend their spoons?
Resources, References and Further reading:
Spoon Theory by Christine Miserandino
Conserving Spoons by Musings of an Aspie
Un-Boxed Brain - Author Cas Faulds talks regularly about "conserving spoons" in the context of Autism.
Invisible Illness or Chronic Illness? A great exploration of the overlap between invisible and chronic illness.