Spoon Theory By Christine Miserandino

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The original Spoon Theory comes from Christine Miserandino, the person behind the blog, “But You Don’t Look Sick!”. It was a metaphor for energy rationing as someone with an invisible disability. Several people have expanded on Miserandino’s metaphor. I have Addison’s disease, a condition where I don’t produce cortisol, quite literally the hormonal unit of energy! I have had to get very concrete with my understanding of stress and how it affects the body.

Yes, chronically ill folks. If this is the first time you’re hearing this: you have an invisible disability. I think it’s important to get comfortable with the word, because disability is not a dirty word. Your strength lies in your community.

Spoons = Energy

Most "healthy" individuals consider some tasks to be zero-cost. The time will pass anyways, so why not do a small chore, a small self care task, or even something fun? These tasks aren’t seen as energy expenditure in the same way going to the grocery store or taking an exercise class would be. For individuals living with an energy limiting disability, there are no zero-cost activities. Even tasks considered restorative by "healthy" individuals often cost energy for someone with a disability like Miserandino’s, or mine.

Living with Addison’s disease has made me get very literal with my spoons. My spoons equate to the mg of hydrocortisone I have programmed into my artificial adrenal pump.

Stress comes in various forms. There is good stress, also called eustress, and bad stress, called distress. Eustress is often not thought of as stress by those "healthy" individuals I keep mentioning. Excitement for an upcoming vacation is a great example. A "healthy" individual might not see that as a stressful time, but for someone who is chronically ill, the emotional excitement of looking forward to something costs energy. They may need to sleep extra, their symptoms may get worse, or their immune system may falter.

The rush of excitement I received at a surprise birthday party was enough to send me into adrenal hangover (my term for the recovery phase of an adrenal crisis, where cortisol is low, but rising.).

Everything in life costs spoons: caring for yourself, working, cleaning, even having fun can cost spoons. Some activities cost more spoons than others. Disability affects how many spoons you wake up with, as well as how many spoons something costs. Think about a trip to the grocery store. It is only a two-spoon activity for many, but for people with chronic illness, it can be a five-spoon activity! I love ordering my groceries online and picking them up curbside for this reason. It saves so many spoons!

If you run out of spoons too early, you could borrow against tomorrow’s spoons. That assumes that you can rest tomorrow, though, because you’ll be starting out with even fewer spoons than normal. If you go so far into spoon debt that you decide to grab that dirty spoon from the sink? Your disability will flare up, your immunity will crash causing you to get sick, and your body will force you to rest until it has replenished your spoons. It is SO important to learn to budget your spoons through pacing. I’ll talk more about pacing in other articles, but essentially it is your ability to anticipate future spoon costs and limit excessive spending of spoons so that you minimize these overdraft crashes.

For many "healthy" individuals, replenishing spoons is easy. But remember, eustress costs spoons the same as distress: so fun hobbies that restore others are taxing for the chronically ill. The only real ways to increase spoons are sleeping, eating nourishing foods, and enjoying restful hobbies.

Forks = Stressors

Everyone deals with stressors, but being chronically ill introduces more stressors and bigger stressors on top of the stress of every day life. Of course, it takes spoons to manage these forks, so it’s important to budget accordingly.

Some forks are bigger than others. Some forks are in hard to reach places, or sensitive places. Sometimes a cluster of small forks is more overwhelming than one large fork. Regardless, all of these forks will chip away at your distress tolerance. You only have the capacity to handle so many forks before you’re overwhelmed completely.

Remove the forks you can reach. Try to ignore the ones that are too difficult to take out right now. It’s a balancing act of spending spoons to remove forks, and saving enough spoons to carry on with your day. In all likelihood, you may have more forks than you could possibly handle with your spoons in one day. If you overspend on fork removal, you end up causing more problems later on because you haven’t kept up with the tasks of the day. But if you ignore the forks completely, they will add up and overwhelm you.

Don’t let your forks get out of control. You’ve got this.

Knives = Diagnoses

Knives are a diagnosis or permanent condition/disability. When you’ve got a knife in you, you don’t want to just yank it out or you’ll bleed out! Instead, you have to put pressure on the wound, tending to it day after day until it heals. It will scar and shape you forever, but that doesn’t mean you have to let it kill you.

I would never wish a knife wound on someone else. Yet, I am not ashamed of my wounds and scars. They are a testament to my resilience and the paths I’ve journeyed. Similarly, while I wouldn’t wish disability on someone, I am proud of how my disability has shaped me and made me who I am today.

Ally Academy: How to support someone who is chronically ill.

If you want to support someone who is low on spoons:

• Protect their ability to rest and recharge their own spoons

• Use your spare spoons to complete tasks off their to-do list

• Pay for services that save spoons

• Be understanding when they are short on spoons, and consider the energy cost of activities when planning together

If you want to support someone who is flooded with forks:

• Not all forks are apparent. If you can remove a fork for them, even if they don’t seem to be worrying about that particular fork, DO IT! Every fork matters.

• Be understanding of poor behavior & dysregulation (this does not excuse abuse, just consider that they aren’t at their best)

• Help them strategize ways to independently remove forks

• Help them recover after removing particularly large or painful forks.

If you want to support someone who has been stabbed by a knife:

• Don’t pull out the knife. Don’t deny the problem.

• Apply pressure. Offer proactive support.

• Embrace the scar. Disability often comes from trauma, but the disabled experience is not traumatic forever. Eventually, it’s only a scar and a story.

Chronic Fatigue Scale

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Chronic Pain Scale

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The other struggle is keeping appointments on track. It’s so easy to forget a symptom that’s been bothering you for weeks when a new symptom has popped up and is far more alarming. Or when you are meeting a new doctor, and it feels like you’re being railroaded to try “diet and exercise” to cure your chronic condition once again? Use this MAP to help advocate for yourself.

Fill out the top half as preparation for your appointment. Then, after reviewing your symptoms with your doctor, make sure all three questions are addressed before you leave the office.

Medicalappointmentplanner

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