I have only just discovered this magnificent way to explain to the individual who say”they look REALLY disabled” in that sarcastic tone. It gets very frustrating. I want to do what I was able to do a matter of 5 years ago, I cant. I am lucky that I was able to play normally with my children before my unseen disability hit me. I try to play with my 15 month Grandson who is the only reason I am here typing this reply! But when I do it uses most of my spoons for the best part of 2 days after! Do I worry about this NO! Because this is a top reason for using all my spoons.
However, on the days when the simplest of tasks like deciding to get out of bed is beyond me thats when it hits me. I am not the guy I was 5/6 years ago I am a shadow of that man. But when my friends see or talk to me they fail to understand that the simplest task of putting on a pair of shoes by myself leaves me totally shattered and not in the mood to do the job or activity I put the shoes on for.
My Mother in Law has finally realised I am ill when I had a particularly bad episode in front of her. She was frightened by it and finally said to my long suffering wife, “He really is ill isn’t he?”
BTW I have Neuropothy caused by a needle being shoved into by sciatic nerve when a so called simple procedure went horribly wrong. And I was unable to get any waste products out of my body. It has left me with one leg that might as well not be there, and the medication has caused untold problems with bowels and bladder. But of course “I dont look sick” do I? Yes it leaves me well “fed up” it leaves me despondent but now I have the spoon theory, I sense a corner being turned.
Thanks for being here.

Thank you so much for posting this delightful analogy. I have read it here before and seen it referred to by others. The days I have spoons left are less and less, I have RA with some cervical spine involvement, it’s sometimes hard to get my head around it as I was only diagnosed 2 years ago. I am finding like you to treasure the spoons you do have and use them wisely. thank you so much for your contribution to awareness of chronic diseases.

This is one of the most profound & humbling things I’ve ever read.

I will not even pretend to understand, but will, instead, re-read this from time to time,, until i think I do. THEN, I will read it again.

May I post a link to this? I feel this was so well written, it should be shared. But only with your approval, of course.

When i was first diagnosed with my illness, i thought the world was ending, to think that there was no cure and that i might have to learn to deal with this forever… i was 23, in complete disbelief and a total anxious mess. In some ways im grateful for my illness now, it has made me put things into perspective and brought out a strength i didn’t know i had. I cried when i read the part about starting your day, eating is a necessity because if you don’t have those tablets, your illness will spiral out of control… and you better be up at the right time to take it early. One wrong move… and you will pay for it, better choose your daily activities wisely and have someone with you who is happy to drive and lead you home when your wiped out. What a wonderful theory, thank you so much.

I am 22 and was recently diagnosed with lupus. I am also a mom of 3 year old twins and going to school to be a Chemical Engineer. One of the things that I find the most difficult to deal with is that while my friends are picking their careers and majors and thinking about where they will be in 5 years, I don’t even know if my mind will be sharp enough to do my job when it comes time to graduate. The scariest part is that I can’t convey this to the people who I am closest too.

It’s relieving to hear so many others out there, but it doesn’t change the fact I can’t do what I used to be able to do. I want people to know, to understand, but then I feel like a whiner. They end up showing pity. I don’t want pity. I want someone to tell me how I can get my old life back. I’m not in denial, but I believe there is a way for me to do what I used to do…it may be more slowly or less often, but I know somehow there is a way for me to enjoy what I used to enjoy…I just need to figure out how.

Thank you for giving us without chronic disease a way to try to understand. I have been fortunate enough to get through my prolonged episodes of issues like chronic headaches and plantar fasciitis that are no longer a daily issue for me (right now). I have worked as a massage therapist and now an OT and I do my best to not only work to understand where my patients are, but also to explain to others why chronic pain is so life-controlling.
I wish you the best. You are a great teacher and with sharing your metaphor you help so many others’ lives. Thanks again.

I just wanted to chime in, that I too think this is a great way to explain, and a beautiful story. I have PTSD, anxiety, panic attacks. I have to choose so carefully… I, too, miss the freedom of just being able to do whatever, whenever, without worrying. Maybe I’ll have that back someday, who knows.

Thank you. You said it Girlfriend!!! Lupus fibro hyperten. diab. … & I’m a caregiver. lol. my mom 3 strokes. aphasia fibro diab hypert … Son -12 ADHD / OCD

Thank you so much for this. Just want to add that as someone with mental illness, I cannot spend spoons wisely. I cannot keep an extra in my pocket, and things unexpectedly take multiple spoons from me. I can start the day with plenty of spoons but then I have an episode, then I encounter a trigger, or something else, and suddenly I have no spoons left at all. Many days I wake up with no spoons, because I’ve spent the night battling my illness. And this is invisible to others, they don’t understand how I can seem fine and then claim to be ill, and they don’t see how all of my spoons went away when a trigger happened.
That said, I love your spoon theory and have shared it with family and friends, and I think that this does help them understand why I can’t commit to attend an event in two days–I simply don’t know how many spoons I will have, and if I promise to be there, that promise is meaningless.

This is fantastic and I feel for every person on here who suffers from any illness.
I have Occipital Neuralgia and am currently at the stages of being diagnosed with either FM or CFS…..however my work have no understanding of what I am going through. I am a Police Officer and after many years of being told the problem was “in my head” I am now going to print off this spoon theory and show it to any boss or Doctor that shows no sign of listening, degrading me or discriminating against me. I absolutely love it and say thank you for helping me with the task of making others ie my employers understand what day to day life is like and maybe then they will think twice about threatening to sack me!!!!!

Thank you so much for this metaphor. I read it years ago and it really stuck with me. It’s a piece of writing which clearly has helped many people in explaining how they feel to people with a different range of experiences – thank you for the spoons you devoted to writing it.

This was insightful, in several ways, for me. Thank you.
I have Crohn’s Disease, anxiety disorder, Bipolar II, asperger’s, asthma and a few other troubles (some which I still haven’t been able to get a diagnosis pinned on), and, though there are some days I’ve been told I look like the walking dead, I usually look very normal. People don’t seem to understand why I am often so distant and tired. I have not found a good way to deal with living with my conditions, and this is a helpful way to look at it. I hope thinking about this will make me more careful with my life.
I also have a mother with Multiple Sclerosis and Fibromyalgia. It’s been a bit difficult for me to accept this, as well, and she does not seem to ration her energy off well.. She usually overdoes it and is incapacitated before noon. I’m going to show her this, and hope it helps her as well.

Thank you so much for this! I was recently diagnosed with RA (rheumatoid arthritis) and have some still as of yet undiagnosed condition causing severely high blood pressure and low potassium episodes that put me in the hospital often.
It’s been frustrating learning to deal with a life long illness that affects the way I live. My life has changed so drastically and it’s scary.
I love this explanation. I hope it well help my friends and family to have a better understanding of why some days, I just don’t have enough spoons!

I have fibro, and other similar disorders, since I was 19 ( 32yrs) and although my husband understands and does most of the housework, cooking etc..( with a smile) my family doesnt/wont understand what its like with an invisible illness. My mother still thinks that I’m lazy, my sisters have since stop asking me to go anywhere, cuz they think im anti-social (cant spend all day window shopping or wine festivals) and the rest think im pandering to get attention!!
I love this explanation, I might just keep some plastic spoons with me to make my point! Thanks!

A friend of mine just shared this. Thank you so much for this analogy. I don’t have lupus, I have FMS and CFS. I feel the analogy still applies. So, thank you again and best wishes for you.

This is really good. I have had CFS and Fibromyalgia for the last 8 years, and asthma all my 21 years. One of my other CFS friends posted this on her fb page and that’s how I came to read it.
I understand exactly how you explain it as I go through the same “spoon process” myself, although I’ve never used that analogy. With your permission, I would like to give this to my friends who have 100% energy 100% of the time, and have no idea what its like to be sick.
My illnesses too are invisible and as Caroline said, people see you one day in the week for an hour and you look fine, but they don’t see you lying exhausted in bed for the next 4 days or so afterwards.
I agree with PlanetNiles too, although I don’t have epilepsy. I often get spoons taken away from me through stressful situations, and I avoid making ANY phonecalls if at all possible as that uses too many spoons in one go.
I cried when I read this and the dozen or so comments underneath and I can associate in some part with all of them, and it helps me to feel not so alone. Isolation, mentally, physically, emotionally is a huge part of invisible illnesses. thank you for helping me to see there are other people out there who understand what I’m going through

Thank you a million times for sharing the Spoon Theory.
I was recently diagnosed, finally, after years of symptoms that went misdiagnosed, with Fibromyalgia.
I am 34 and have been “sick” at least since I was 27.
People tell me I don’t look sick, or just pop an Advil for the back pain. They wanna know why I’m not working when I am clearly online everyday blogging my pain.
They don’t get it. My parents who are helping me don’t really get it.
But the spoonies get it.

That makes me feel not so alone.

Loved this story! I was just diagnosed with Systemic Lupus a month ago, though I have had the symptoms gradually appearing for the past 5 years.
My Mom doesn’t understand nor does she seem to want to accept it. her and my Doctor have both been saying its not going to change my life so I shared this with all of my Friends and Family members and now just hoping it will help them understand.
Living with any invisible Illness can be hard and take a lot out of you but just hearing stories of People with these Invisible illnesses makes it easier to live. Even though you have to conciously think about the decisions you make- It can truly be counted as a blessing too. We have the gift of slowing down and making our decisions count for something good, we don’t just go out and do things anymore but we accomplish that which will make our lives more fulfilling in the end.

I have lived with chronic illness for the last fourteen years (more than half my life), all neurological, all mostly invisible (the epilepsy is, unfortunately, extremely visible).

I’ve always explained it similarly, though the spoons are much more clear. I like to explain feeling ill after someone has just gotten over a cold or the flu. They feel wonderful. They can’t feel better. They are so happy that they don’t feel sick anymore. With my hands, I show a level. That’s 100%. My friends function at 100%. Usually, I function somewhere below that. My “100%” may be 90% or 80%. That is the best I ever feel. Then I go through a typical day with them, showing how it wears on us.

I find your example much more illustrative. As another poster (who experiences seizures) said, and I agree, I can’t always plan those “spoons” that I’m going to lose the day I’ll have a seizure. If I’ve already lost too many “spoons” and I have a seizure, it might trigger another (and probably cost me the next day’s or so as well).

I have Asperger’s. People never understand why I can’t do certain things. I look normal, so I should be normal, right? But I’m not normal. I never have been and I never will be. Every day I have to try harder than other people to do things. If I have to make a phone call, I have to work up the courage because I know it will be stressful. Oftentimes I don’t even try because I just hate it so much.
It’s more than just social issues, too. I am very sensitive to bright lights and to loud noises or too much going on around me. Sometimes my husband thinks I am being difficult on purpose, but I’m not. Things just overwhelm me. Sometimes very simple things. No one else can see what is in my head and how I am feeling and being affected by things, and I don’t know how to explain it to them.

Aw, that made me cry. It`s exactly the way it is, spoons, so clever! Maybe my friends and family can understand a little better 🙂 Hugs from me

I love this! I linked to it in one of my sites quite a while ago, but I still come back here and read it every once in a while. It helps me to remember that I can only accomplish so much. I also suffer from chronic illness (fibromyalgia, Chron’s, asthma, and Idiopathic CNS hyper-somnolence), and often have a hard time making it through a regular work day, just because of the continuous hours. When I think of the spoon theory, I realise that there really is only so much that I can do, and that I shouldn’t feel bad when something takes me 2 or 3 hours one day that took me only 30 minutes or an hour just the week before. Thanks!

I don’t have Lupus, but I have been dealing with Asperger Syndrome for 52 years. I’m glad I don’t have Lupus, and you should be glad you don’t have Asperger.

I’ve been living with this, and learning to accommodate the various obstacles created by Asperger for my whole life. I am in fact quite capable of things that should be impossible according to the diagnosis. But what I find hard to explain is that all of those accommodations are hard work.

I spend my day as a CSR on the phone, having conversations with strangers. Conversations with friends are hard, with strangers it’s harder, but I can do that, and quite well — but each one uses up more of a limited store of personal resources to be able to do that. After a day of conversation, I don’t want to talk to -anyone-, friends or family included, because all the conversation I am capable of, all the “spoons” I have, are simply gone. If I manage it at all, it’s no longer an effort, now it’s nearly painful, and quite exhausting.

So my family seems to think I’m heartless and uncaring, because I just don’t have the wherewithall to even talk to them at the end of the day or end of the week. There’s only so much.

I do a podcast about my life, including sometimes discussion of Asperger, which is sometimes an obtrusive part of my life. I’d like to read “The Spoon Theory” into the record, if you will, of my podcast, because I think your story, though about a whole ‘nother invisible condition, explains quite well what folks like me face, even though we appear to be coping quite successfully.

There’s always a cost, and there’s not always enough to pay for it.

Thanks.

Griz

Just beautiful. Well said and well explained.

What I don’t understand is why some people don’t feel this is appropriate as an example of our limited energy. I feel sorry for someone who has little to no patience in dealing with others and trying to explain what we go through on a daily basis. But I guess some people still have not come to terms with their own limitations in a graceful manner. I have CVID. I don’t look sick. But I am most of the time. When I’m not sick, I have to look out for others that are. Are you coughing, is your nose running, did you wash your hand. Because your cold WILL make me sick.

Thank you Christine for this beautiful theory on energy. I will use it if you don’t mind.