The Spoon Theory & Chronic Illness
Have you heard of the spoon theory?
The spoon theory is a way to illustrate the energy and stamina limitations that result for those living with a chronic illness.
Using spoons as a unit of energy, spoon theory estimates how much an individual can expect to do each day. And how many spoons their tasks require.
In other words, it helps those coping with chronic illnesses to visualize their energy expectations for each day. This becomes a sort of yardstick for pacing yourself, and what you need to prioritize.
People with chronic health condition are often called “spoonies.” This label on social media helps these individuals find community among others with chronic health conditions.
Who Came Up With The Spoon theory?
The original “spoon theory” came from a blogger who is chronically ill. Christine Miserandino has lupus, which is an autoimmune disease.
In 2003 she was having lunch with a friend. The friend asked her how it feels to be sick.
On Christine’s blog, she said: “How do I explain every detail of every day being affected and give the emotions a sick person goes through with clarity?”
So while she was dining with her friend, Christine grabbed spoons from other tables. She gave 12 spoons to her friend and asked her to describe an average day.
The friend recited a day’s worth of activities. And with the mention of each activity, Christine took spoons from her.
The spoons represented the units of energy each activity required, she told to her. And when there were no more spoons, it meant there’s barely any energy to do anything else.
The more spoons that were used, the more her friend would need to ration those she had left. Someone who is healthy would not have to think this way.
One spoon might represent trying to get dressed with painful swollen joints. Or preparing meals when you can barely stand up due to pain, etc.
By 7 p.m., Christine’s friend was out of spoons. And she hadn’t even listed all of her activities for her day yet. Thus she was left to wonder what to do next.
Christine explained that she makes choices and sacrifices every single day because of her illness. And that’s how it feels to be chronically ill, to answer her friend’s question. To not know each day how she’s going to manage.
Then her friend understood what it was like to live as Christine lives. With the loss of the not knowing, and dealing with the pain when it takes over.
Managing Chronic Illness With Spoons:
If you have a chronic illness, then you probably don’t have the energy you’d normally need to get your daily activities done. I know I don’t.
One day you might do fairly well. The next you might be in extreme pain.
You have no way of knowing when you wake up what kind of day you’re going to have. If you’re already in pain, then you know it probably won’t be a good day. Just brushing your teeth might be exhausting.
The not knowing how you will handle life’s demands can bring about a feeling of helplessness. Along with things like depression and anxiety.
Every healthy person in your life has no way of knowing what it’s really like for you. They can’t know. But with the spoon theory, maybe they can begin to understand.
The “spoon theory” describes what its like to live with these boundaries every single day.
Your friends might have a limitless amount of spoons, whereas you only have a few.
You might wake up already feeling fatigued. Then you probably only have a limited amount of spoons to get through your day.
If you try to use more spoons than you have, you may pay for overuse by feeling even worse the next day.
The spoon theory gained traction on social media. It resonated with other chronically ill people who struggled to describe their life to friends and family.
A Few Examples:
A woman named Amanda Thompson has Hashimoto’s disease, an autoimmune condition where your immune system attacks the thyroid gland.
She uses the spoon theory to tell her family when her energy is in short supply. “I’ll say I don’t have enough spoons for that, or I’m out of spoons,” she says.
Her advice to new spoonies: “Your support system is going to have to understand what’s happening to you. They need to know it’s not that you don’t want to do something when you’re out of spoons. It’s that you physically can’t.”
Alicia Anderson, 43, said she has the most spoons when her disease is under control. She has psoriatic arthritis, an autoimmune disease that causes joint pain.
“In the beginning, showering took a spoon away and then I had to nap for an hour afterward,” the Atlanta resident says.
Other activities costs her several spoons even when she’s doing well. “Going to a store is a two-spoon event because of all the sensory input,” she said. “A doctor’s visit is easily two or three spoons, even if it’s an easy one.”
So now you should understand the spoon theory. You might want to try adapting this approach to your own life if you have a chronic illness.
The other day I changed the sheets on my bed and it was a major event. I had to stop in the middle of changing the sheets and lie down for a bit.
Often I have to lie down in the morning after making my bed before I can do anything else. I’m finding ways to adapt to living with pain to get through the day.
Excellent. I have tricky lungs, some days I can go and do with endless amounts of energy. Other days, walking to the car is enough to knock me out. It’s hard to explain that to people, but I’m going to use the spoons next time I need to…Thanks.
Several years ago both Hubby and I were told we had Hashimoto’s…but the tests taken a year ago did not show it…so doc says it must be not active right now. We have other health issues too so fatigue is ever with us. But it is very true that we must meter out what we do. When we run errands I know my husband cannot manage more than 3 hours…so we try to do the errands in order of importance as often we have to go home early. So some things I have to buy online. I try to keep extra food, bottled water and meds on hand because we simply cannot know how we will feel one day to the next. But we try to be grateful for the days we can manage best. Aging is not easy!!
I struggle with Hashimoto’s Disease so I get it. Some days are fabulous and others are terrible. I end up sleeping away the day.
Excellent explanation of the spoon theory. My daughter, 34, was just diagnosed this year with fibromyalgia. It is a nasty one. Her energy levels have gone way down and she becomes fatigued quickly. It scares me for her future.
I am saddened to hear of your pain as I know how active you have always been.
Wow, I love hearing of the spoon theory and should make it easier for people with and without pain to gauge and plan their day. Sunny, breezy and cool here. I love to see the leaves swirl and my clothes blow on the line. Have a peaceful day!
Brenda, I have both hashimotos and psoriatic arthritis, as well as fibromyalgia so I am well acquainted with the spoon theory. I am also a registered nurse. I hope you will visit your doctor and advocate for yourself until you get some answers. What you are experiencing is not normal aging. Possibly complex regional pain syndrome? Google that one. Do not let anyone dismiss you as it’s “not that bad” or it’s all in your head. Older women are treated with a pat on the head in the medical community here in the United States. You have to be persistent. I wish you all the best.
I’m sorry for what you must go through every day. It’s hard to manage the 4-5 miles to get to my doctor. Then I have to get from the parking lot to the building, and on it goes. I would probably use all of my spoons just getting to her office and back home.
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there ARE ways to get to your doctor… a friend, relative, Uber, Taxi, reach out to HHS in Oklahoma… Do Not save your spoons, Brenda. Spend them. My invalid S-I-L in McAlester, who has no car, uses a taxi service provided by Medicare/United Health Care to get to the doctor and hospitals. You have to WANT to do it; Kelly is right. You need to advocate for yourself.
It’s vital you get to a doctor to get to the root of your pain issues which are effecting your life to the point where you don’t believe you can manage the drive and parking related to a medical appointment. Take a cab or an Uber if you can’t get a lift from a neighbor or busy daughter, but get yourself there. Maybe talk more to your physical therapist about this.
I feel for you, Brenda. I know exactly that feeling because I’ve been there. People that have not experienced it really cannot understand. But I’m here to tell you, it’s not normal and likely there is treatment for whatever is going on. Please consider seeing your general practitioner as soon as possible. Hire somebody to drive you whether it be an Uber or a senior transfer, etc. call ahead to the doctors office and ask them to meet you with a wheelchair. Plan to have something ready to eat that evening that can just be reheated. Take a list with you of all of your symptoms and let your doctor know about each and everyone of them. And be specific. Don’t just say “I’m more uncomfortable than usual”. Say “I can’t get through making my bed without having to lie down. I had to have somebody bring me to this appointment because by the time I get out to the car I am in so much pain and so exhausted that I can’t drive. “ Be extremely specific. And be prepared to be written off with a pat on the head. If that is what happens, it will tell you what kind of doctor you have and let you know that you need to find another doctor. If your doctor takes you seriously and starts ordering tests and has some ideas, then that’s a starting point. Look up your symptoms online in every way you can to get an idea of what you think might be happening. I still say Google complex regional pain syndrome. You are much too young to just accept this as your life. It’s not normal and there are treatments. You just have to advocate for yourself and push for the right diagnosis. No one else can do that for you. I know it takes a lot of strength and energy that you don’t have. But think about it this way. Can you afford to live the rest of your life like this? I really hope you get some answers