Thank you so, so much for sharing this story. I finally, after 22 years, have a way to explain to people what it’s like to have Lupus, Fibromyalgia and chronic fatigue and pain. So much of my life has faded away and it’s so hard sometimes. This is the perfect story to share to help my family and friends understand how I have to manage my energy. After all these years, they still don’t get it. Thank you.

I just emailed this off to my best friends, who have wondered and asked about my illness (Lyme Disease with a slew of co-infections). This is such an incredible metaphor and example of what it’s like to live in an invisible illness. Bravo for this! I’m sure you are helping invisible illness people all over the land with this post! Myself included 🙂

You have just explained my life in a way I never thought of doing! I don’t have Lupus but I do have a several chronic illnesses and have to choose what I do each day. Thank you for putting into words how I feel and may God bless you as you live each day with the spoons you are given.

This is wonderful, and so simple I’m surprised I never thought of something similar. I’ve had fibromyalgia and other fun things for nearly 20 years. Now I’ve turned all that experience into therapeutic mentoring work, and my client base is growing around the country! Great to have an understanding place to share these things. It takes time to get that they never will really “get it,’ but that might help me come from a better place when I share the spoon theory. Looking forward to it.

This is beautifully written. Thank you for your theory it will follow me through the rest of my days.

If you want to look at it that way, sure. To keep to the same analogy, everyone has a finite number of spoons. (The limitless spoons thing is the only part of this piece that I’d disagree with–well, that and that it should be fewer spoons, not less spoons.) We all have a given number of spoons, and choices we make take away some of those spoons. Do you have a spouse to answer to or children to support? If so, you have fewer spoons to work with than an able-bodied person without those responsibilities. Various jobs take varying numbers of spoons, so your career can affect the number of spoons at your disposal, too. The difference lies in the fact that you chose to marry, you chose to have children, and you chose your occupation.

People with physical/mental/emotional/psychological disabilities aren’t just faced with a finite number of spoons; they’re starting out with a spoon deficiency, and they may have to use multiple spoons to complete a task you could complete with just one spoon. So yes, limited time and energy does apply to everyone, but not everyone starts out on equal footing.

Technically yes, but only if you ignore what is actually going on. A healthy person comparing his time and energy limitations to someone with a serious, chronic illness is like Donald Trump complaining that his pool guy didn’t pick up the check when they had dinner together.

People with a chronic illness almost always have significant pain when they do anything. Put on shoes? Pain. Walk out to the car and climb in so you can be driven to your medical appointment because you no longer have the ability to drive safely? Pain. Take your cell phone out to answer it? Pain. Get a glass of water and gather up your medications to take them? Pain. EVERYTHING ELSE YOU DO? Pain. By itself, fighting pain is exhausting. When you only have a third as much energy as most people because of the physical effects of your illness, fighting the pain so you can complete simple tasks uses up energy you cannot spare.

When you have a debilitating illness, everything takes much longer to accomplish. Not only do you physically move much more slowly, but you have to find ways to do things that are compatible with the pain and physical weakness or other debility that you have. The way that you find to accommodate your physical problems always takes longer than the way healthy people do it. If not, they would already be doing it the way that you found. So the time you have available to accomplish things is quickly used up.

In addition, most people with a debilitating illness have to spend a significant amount of time and energy on medical care. Going to medical providers for examinations, tests, or treatments, going to the pharmacy, etc. This is more time consuming that healthy people realize. When you only have a limited amount of time and energy, one visit to a doctor and subsequent visit to the pharmacy is pretty much all you can manage in a day. It will cost you all of your spoons, so to speak.

People with debilitating, chronic illnesses almost always need more sleep than healthy people and usually have many more problems with sleeping soundly, due to pain and other effects of the illness. Therefore, instead of the 16 hours a day that a healthy person has to get things done, a “sick” person may have only 12 or often, even fewer. Coupled with the limitations I have listed above, this is much different than the situation for someone who is not ill.

Every day, people have to spend a certain amount of time and energy on basic life maintenance/survival stuff. bathing, dressing, doing laundry, paying bills, working (if possible), shopping, preparing meals, eating, cleaning, etc. For most people, the time they have available in a day is adequate. Most people can even manage a fair amount of leisure time for watching TV, going to movies, socializing, working out, etc. When you are faced with the difficulties that someone with a chronic illness faces, often, the time and energy you have is not enough for even basic tasks, and you have to decide what tasks you are going to use your spoons on.

So, to answer your question, of course everyone has limits on their time and energy. People with a chronic illness have greater limitations and everything they try to do uses up more energy and time than for those who are healthy. That is exactly the point of the article. Ms. Miserandino explained it very eloquently and well. I am giving another explanation because your question makes it seem as though you completely missed the point.

Thanks for this. I think I’m going to try to use this to get people to understand that there are going to be days (like the one I had today) when it is just too hard to even pick up a spoon because the pain is just too bad.

One of our family members has Sjogren’s – another has CFS and Celiac Disease – this is the best description of what they go through on a daily basis that I have ever seen. Thank you Christine for putting such a concrete image to what they face.

Well said! My mother suffered with CFS and Fibromyalgia for years, she did find some remission eventually but she still remains on Nortriptyline for management of her pain and it works well for her. Haters and skeptics will continue to do exactly that but bugger them, they’ll live in their ignorant bliss until they are touched by the pain in some way. I agree with you, what you or I or anyone else has doesn’t need a name, it is what it is and you just continue to the good fight to the best of your ability.

Went to another neuro today. He was actually fabulous. He’s not too into the fibromyalgia diagnosis in the 40’s but he actually made more sense than any of the 20 doctors I’ve seen. Your mind is THE most powerful organ in the body (aside from the tongue which can destroy people’s lives quicker than cancer) but… Yes your brain sends signals Throughout your body to your muscles and nerves of excruciating pain due to another killer..stress. I was (up until 2 months ago) THE most badass, strongest, mind focused, active, non stop, full time mom, medical professional, wife, and every other title possible. In the past couple months I’ve become debilitated with chronic pain all over my body with no answer ur Fibromyalgia. So it’s real whatever the hell it is, Fibromyalgia, chronic pain, whatever healthy people or people who don’t understand until it punches you in the face (or entire body) call it. BECAUSE I was a healthy happy functioning non spoon person and now guess what?? I’m physically and mentally agonizing over the fact of having whatever I have. (I’ll pacify the non believers of Fibromyalgia or any other illness they’re skeptical on, on here only cause I’m sure they’ll come in contact with a dear loved one with some sort of invisible illness and have to eat Their words.. Or more) but… I have Fibromyalgia, don’t care what the name is. And I have had every test done even ones that aren’t even approved yet cause I can, being a medical professional I have the means to, and I’m highly educated on many blood tests done for these symptoms, X-rays MRI’s ct scans therapies, homeopathic you name it (skeptics, if can) and I’ve had it. Unless you’ve been to a 12 year college have an M.D after your name, don’t discourage or bring people who are already in pain with whatever their fighting down even more. If there is a M.D after your name n you still bring people down then quit cause your a terrible person n should work in a cave digging for worms. Just giving my opinion keep fighting and feeling good my fighters!!!!

Why are you against people suggesting that you get help? Maybe they want you to feel better. I understand it won’t fix everything but it is a start.

Fibromyalgia is diagnosed by a survey. If you answer, or the doctor answers for you, that you have 3 pain zones and severe unrestoritive sleep, fatigue and cognitive issues you get the label. That’s really all there is to it. There’s good reason that most people and even more doctors don’t believe in this. With your health on the line, I’d recommend you take a look at the other side of the discussion at fibromyass.com or facebook.com/fibromyass

This is THE BEST way to explain my invisible illness. I have been recentley diagnosed with fibromyalgia and everyone says, what is it and what does it do or feel like and this is exactly what I wil tell them to read. Thank you thank you so much. God bless you.

Thank You, I have sjrogrines syndrome and feel this is a great way to describe how I feel, we need to listen to our bodies

I used 2 spoons just reading this….. maybe summarize the story a bit. It’s a good analogy, I deal with this after suffering a stroke 5 years ago.

Bob, I ….nah … never mind….never mind…

You’re charged one spoon for stealing a spoon.

I didn’t take it as offensive at all. And I’m sure it wasn’t meant to be. It came from a place of loving concern and the hope that maybe she could offer some suggestions that had helped her. At least that was my take!

BOB get a job! You have way to much time on your hands!

It is a metaphor, Bob; you do understand that, right? She was asked a hard question and came up with a creative and intelligent way to illustrate her answer in a way that could be easily understood by others. I, too, have a chronic condition, a “debilitating, progressive, life-long neurological condition. It can be very hard for people to understand- the spoon theory is a good way to help the people close to me “get it.”
I’m trying to understand why this angers you so much, why Christine helping her friend understand her condition and its impact on her life bothers you so much that you have to spew such negativity about it. She didn’t ask for her issues any more than you did, or I did. Where is your compassion, your empathy, your appreciation of her resourcefulness, or solidarity in reading about another person facing challenges every day? Or are you just putting the nastiness out there for the responses, looking for an argument with someone, anyone, so you can feel noticed? If so, what good are you trying to fill?

Disqusting!!!

I heard about this theory on a website dedicated to scleroderma patients sharing their experiences.
I have NEVER read anything that describes my condition as succinctly at this! It brought me to tears.
I must share it with my husband. I know the Spoon Theory will help him better understand my condition far more effectively than my explanations ever could.

Gee, angry much? Sounds like you feel you’re not getting enough attention in life for all your boo-boos. So trolling a blog written by a chronically ill person for other chronically ill people makes you feel better? Do you kick seeing eye dogs too? You don’t just have issues, you have entire subscriptions. Several. This is not a cult. It’s called “relief”. At finally seeing someone nail it. I wouldn’t know this woman if I tripped over her. I do not light a candle, or pray to her. All Christine Miserandino did is eloquently explain something that is very hard for others (Imma take a wild guess here and include yourself in this grouping) to grasp. If you don’t suffer from the chronic fatigue that goes with Fibromyalgia, Lupus, Crohn’s disease or many diseases, you do not understand how doing one more thing, or going one more place just sucks the life out of you. Whether you personally get it or not, doesn’t change my reality one iota. It isn’t “It’s called energy. You start the day with a certain amount of energy and it runs out then you sleep.” While you may, I don’t. I do not wake up with any energy. I have none all day. I have none when I get home. After work. After running errands. (BTW, I work 40 hours a week). I can’t sleep in a bed. I sleep in a chair. And I also have insomnia. So when I should go to sleep, I can’t. Not everyone feels exactly like you do. No pity parade, this is just how my life goes, and I deal with it. Every minute of every day. If you do not suffer from a chronic illness, this blog, and the spoon theory really isn’t aimed at you, so what is your point in commenting? I mean other than trolling?

I would like to post this on my wall with accreditation please.