16 Metaphors for Chronic Illness to Use When the Spoon Theory Doesn't Fit

Of all the various aspects of chronic illness that healthy people don’t have to deal with, the lack of energy (even if you “look fine” or “seemed OK yesterday”) is one of the hardest ones to try and get them to understand. That’s likely why Christine Miserandino’s Spoon Theory metaphor was embraced by the chronic illness community as strongly as it was when it was published in 2003. Miserandino came up with the Spoon Theory as an attempt to explain to a friend what chronic illness is like, utilizing spoons as a metaphor for units of energy that are spent with everything you do in a day. She handed her friend a pile of spoons, then took them away one by one as her friend described what she had done that day, cleverly showing how every single thing you do costs energy, and you have to decide where to “spend” your spoons.

In the years since Miserandino wrote the Spoon Theory, it’s become a rallying cry for chronically ill people everywhere (many of whom now call themselves “spoonies”) and has helped countless people explain to their friends and family what chronic illness is like. But because “chronic illness” is such a broad term, and everyone’s illness affects their energy and pain in a different way, some people have admitted that the Spoon Theory doesn’t fit their lives all the time. Maybe you personally don’t connect with the idea of spoons, or you can’t really budget energy the way the Spoon Theory implies.

For those moments, when you want to describe your challenges with energy and chronic illness but the Spoon Theory doesn’t apply, check out these metaphors our chronic illness community shared. Which of these most closely represents your experience?

Here’s what our Mighty community shared with us:

1. “It is like having a bad phone charging cord. You plug it in expecting to wake up with a full battery. But the cable didn’t connect properly so you wake up with 20 percent or less. No matter how much you try to rest, or ‘plug the phone back in to charge it,’ it doesn’t always work, or you only get another 5 percent after hours of rest/’charging.’ You never know how much battery power you will have at any given moment, and even when you try you can not fully charge when you need or want to. You just have to take what you get and use the power wisely.” — Priscilla G.
2. “My chronic illness is also chronic pain that I deal with 24/7/365. I describe it as a dimmer switch. The pain can be turned way way up until it’s horrible and unbearable, all the way down to where it’s barely noticeable but definitely still there, and everywhere in between, but the pain is never turned completely off.” — Katherine O.
3. “I like using a ‘played a football tournament then had Christmas dinner with all the family, then had no sleep then traveled the country’ or something along those lines. It makes sense to people who won’t get it otherwise.” — Tessa R.
4. “I live with a swarm of invisible stinging insects. On good days, the swarm is quiet and calm, lulled into some level of contentment. Not-so-good days exist on a sliding scale determined by the swarm’s restlessness and agitation. I get stung — sometimes more than others. Both the stress of living with the experience and their venom has an impact on me, even as the effects often cannot be seen or measured.” — Arria D.
5. “I think of my energy like the gas tank in a car. Except it’s never completely full and the gas gauge doesn’t always work properly so sometimes you run out of gas suddenly and unexpectedly. And it can take forever to fill up again.” — Sarah B.
6. “I like the analogy of lives in a video game… You can lose health and need to recover by eating or sleeping, or you can push through the day at a detriment to the longevity of the health bars.” — Celaena W.
7. “I usually say something along the lines of ‘If I won a trip to Disney right now I wouldn’t be able to go’ (I am a Disney addict) or something to that effect!” — Melissa M.
8. “[It’s like] playing a caster in Dungeons and Dragons with no open spell slots.” — Alexis T.
9. “I would compare it to a bucket full of water with a small hole in it. Me being the bucket and the water is my energy. Water is constantly leaking out of the bucket. Some days the hole is larger or smaller and certain activities will poke more holes in the bucket causing water/energy to drain faster.” — Chelsea C.
10. “Lately it’s like I have a low baseline of energy that allows me to do small things like switch positions, keep track of when I last ate, or hold a conversation. There are some daily necessities that require more energy than I have. So if I have to use the bathroom or eat a meal I dip below that baseline and I have to lay very still for a while and do nothing until I return to my normal level of fatigue. That’s the best way I can describe it.” — Jillian S.
11. “It’s like waking up hungover, you feel tired and sick but didn’t have a fun night out.” — Montana F.
12. “It’s like coming home from work at the end of a long week, where your boss yelled at you every day, and you just want to collapse into a weekend except there is no weekend or vacation ever and it feels like the end of a rough week every single day.” — Sally F.
13. “A woman I met uses money. Everything you do costs money, but sometimes you just can’t afford stuff so you have to budget. Everybody gets having to budget. So I now say to the hubby I don’t have the money in the bank to do that, or I have some spare money but just a little.” — Melanie B.
14. “I explain mine like a bowl outside. When I do things it’s like rain filling it up. When I sleep it’s sunny. And some of the bowl dries up. But if I do too much and it rains too much the water overflows the sides and I have to rest a lot like the sun empties the bowl once again.” — Casey W.
15. “Some days I feel like I’m walking through prickly, painful molasses. Others, it’s plain molasses. Either way, everything is slow and sluggish, like molasses!” — Colleen S.
16. “I feel like Pac-Man, I keep trying to chase the energy, but those damn ghosts are always after me!” — Alice J.