Except that you’re NOT unbiased. Being a proponent of ‘spoons’, you very much are NOT unbiased and will do anything to read my words with bad attitude injected into them, much of it your own, I’m sure. I have re-read what I said. Maybe YOU need to go re-read it. I said “It’s too confusing and it only works if you happen to have spoons handy.
I have a couple “invisible” diseases, so I know all about the concept,
but even I was confused the first time I heard it. It made absolutely
no sense.” That is copied and pasted directly from my post. How is that in any way having a bad attitude? Then I got ATTACKED for those words, and THEN I may have gotten a little bit of a bad attitude, but who wouldn’t when being attacked for not understanding something and saying as much? I suppose you’d call a kid stupid and attack them for not understanding something they were told in school, too, wouldn’t you? And then say THEY had a bad attitude if they got a bit touchy with you after that?

So, am I a bit touchy after being attacked for not understanding something and also not understanding why some people think that it is so great? Yes. Am I in any way being a martyr? Absolutely not.

Wait, wait, wait. So, saying something is nonsense TO ME, and sounds stupid TO ME, is insulting, but more than one person saying I have a bad attitude (which I don’t), am unhappy (which I’m not), and just generally ATTACKING ME isn’t insulting in any way?! How on Earth do you figure that? Oh, right. Because if someone doesn’t agree with you, that means THEY’RE the ones at fault. I completely forgot. You know, instead of ganging up on and attacking people that your precious “theory” makes no sense to, did you people ever think that it may actually HELP your cause to try and make it make better sense? Yeah, I didn’t think so.

differing opinions are offered with respect. they do not consist of calling something STUPID and NONSENSE – those are insults – not a differing opinion. stop playing the martyr and examine your words carefully.

i have read each and every one of your comments Christina and i honestly can’t understand why you are so vehemently trying to derail the spoon theory. what on earth does it matter to you if someone uses it or doesn’t use it? if it works for THEM good. if it doesn’t work for YOU good. don’t use it. you don’t have to go on a tirade and smear campaign. calling something stupid isn’t disagreeing with it – it is attacking it’s validity as a whole, which is inappropriate because it is effective for many people and as someone not engaged in this discussion but only viewing it from the outside, you seem incredibly defensive, aggressive and rude. you have the right to your opinion and to disagree with something – but you don’t have the right to demean the idea utterly nor try to shove your opinion down everyone’s throat in such a nasty manner.

You know what’s rude? Trying to make me feel bad because it IS nonsense to me. Just because I have a different opinion than some people’s pet ‘theory’ (and calling it a theory when it very much ISN’T a theory is way more insulting than it making no sense to me), does NOT give people the right to jump on me and tell me I’m wrong. Or that I have a ‘bad attitude’ or am ‘quite an unhappy and angry person” because I don’t agree with them. No, I only became an unhappy person because people were calling my unhappy and angry!

THAT, madam, is RUDE.

No, calling it a bad analogy is just being truthful. An analogy is supposed to be when you compare one thing to another, in an effort to make it easier to understand, so that you DON’T HAVE to explain it. The whole point of spoons is that it’s a way TO explain things. Since it fails in it’s job to make explanation unnecessary, that makes it a bad analogy. And that IS an observation.

Your quite an unhappy and angry person. I feel sorry for you. If your don’t like the theory then don’t use it. Mostly everything you’ve said seems nonsensical. I think your bad attitude was part of you long before you began insulting people.

Thank you for sharing the spoon theory. I had never heard of it but now that I have read it have shared it with a couple people ( no real spoons needed) and they FINALLY seem to understand. They actually thanked me for “giving them insight into what people in pain go through”

I’ve had CFS for nearly ten years now and I wish this had been around when I was diagnosed (which was nearly seven years ago, but my doctor realised I’d had it for three years undiagnosed) because I agree, this is a very good representation of what it’s like to live with CFS.
I wish you many good days and a lot of spoons.

The neat part about finding this way to explain what we are living with is that it actually helped communicate all of this to my 16 yr old son. I caught him during a fairly calm time (because as we all know, teenage brains cannot absorb much info) and told him the story in brief. I wasn’t sure he would get it, but he did. He actually explained it to my older son one day. My older son has pretty significant developmental delays and was giving me a hard time. My younger son told him to go easy on me so that I would have some spoons later on that day. That was the best thing I could have hoped for! Before this I had been routinely called lazy by my sons and questioned why I was in bed so much…

“Anyone that doesn’t want to confuse people should stay away from the spoons “analogy”. Only someone that WANTS to confuse someone would use it.”

I’ve actually found just the opposite. Spoon theory — or some close approximation thereof — has been invaluable in clarifying what I live with to people in my life who truly didn’t understand my behaviours until I framed them in that context. Afterwards, they understood — maybe not intuitively or completely, but well enough that I no longer deal with accusations of laziness or of not caring. As for that last bit, I certainly didn’t want to confuse them further. That wouldn’t have served any goal; it would have made things worse. I wanted to clarify, to explain, and spoon theory provided exactly the kind of tangibility I needed to fully articulate my thoughts.

“Like I said, unless you already know the spoon thing, then it doesn’t make sense.”

That’s just not true. I was the first of my friends and family to find this article, and I quickly spread it around to them. Many of my friends and family who suffer from mental or chronic physical illness immediately understood, because they could relate. It took a little longer for my friends and family who are lucky enough not to suffer from chronic illness to grasp it, but not by much. Without exception, every person I’ve explained it to has come out of the conversation understanding, at least to a degree that I’m comfortable with, what it’s like to live with chronic illness.

“The only reason some people cling so hard to it is that it make them feel superior to people that they have to explain it to.”

This may be true of some people. There are a lot of people out there who try to control their illness by finding a way to one-up someone else. However, for a lot of us here in these comments, and for a lot of us who cling to spoon theory, the main reason we cling to it is because we have found that it enables us to explain to our loved ones why we can’t behave in the ways they think we should, in a way that our loved ones can grasp without having to “take our word for it” about our experiences.

Spoon theory (and you’re right, it’s not a theory, just an analogy) is, for some, a way of contextualizing our experiences in a way that people who have never experienced what we have can understand. It certainly doesn’t work for everyone, and it’s not a perfect analogy, but I don’t think it ever claimed to be. But to make such sweeping generalizations about everyone here is to invalidate our experiences — something we’ve all, yourself likely included, dealt with far too much in our lives. We really don’t need any more invalidation of our thoughts, feelings, behaviours and coping mechanisms, especially from inside our support systems.

I don’t expect you to suddenly change your mind about spoon theory. Your thoughts are your own and they are just as valid as mine. It doesn’t work for you, and that’s okay. But please be careful when you make such sweeping generalizations about the people for whom it DOES work. We’re not all your sister-in-law. We’re not all trying to find a way to one-up someone else. We just want a way to explain that no, we’re not lazy, good-for-nothing, avoidant assholes. For many of us, spoon theory has helped us do that.

I’m sorry you took what I said as a personal attack. It wasn’t meant as such. But saying something is “stupid” or “nonsense” because it doesn’t work for you? But again, thanks for your opinion

Even though I can’t say I know exactly what you are going through, I know from similar experience. I’ve been dealing with mine for about 15 yrs now. I know how hard it was for me to let go of my own expectations for myself, as well as feeling like I let those that I loved down. It was hard and my family never really got it. But I was determined to make the best life I could, no matter what. And I have made a good life for myself when I began to understand “now” and “for me” and it keeps getting better. My family began to understand when my mother got seriously ill and almost died a few years ago and how it changes your life and the things you do after and what you have to do after, to remake your life again. And when I showed them the spoon theory, they understood a little more. I wish I could carry a sign around my neck that says “this is a good day!” for the times I do manage to do my hair or my make up and go out in public. Most people don’t know I live my life in sweats and t-shirts, that taking a shower, brushing my hair, brushing my teeth… That’s like a full day’s work to most people. Most people don’t understand that. And to be honest, I don’t even remember really living any other way. Blessings and extra spoons to you!

I HATE the spoon analogy. Why is everyone so in love with it? It’s too confusing and it only works if you happen to have spoons handy. I have a couple “invisible” diseases, so I know all about the concept, but even I was confused the first time I heard it. It made absolutely no sense. I mean, it’s not like everyone carries around a dozen spoons with them all the time for illustrative purposes. (I mean, that would cost you 1 right there.) It works much better with something general, like ‘points’. Different tasks take a different amount of points, which can even vary from day to day. It’s much easier to explain with a term like ‘points’, because everyone understands the term. No one understands the spoon analogy unless they’ve already heard it, which defeats the whole purpose of being able to use an analogy.

Put into words perfectly i live with this disease every day i gotten laughed at not so nice things said to me and it hurt….. I explain my side but i get it cant be that bad ur not hurting ur over exaggerating, when i could barely move or open a pop let alone lift my own body up its a every day real struggle thank you for this story….. Due to my lupus i had over 7 surgeries fybromyalgia, osterperosis, brittle bone disease, and asthma it is very very hard i even lost my baby due to this disease, i wanna give up but im a fighter and will fight as long as i am still alive

thank you so much for this article. i have had chronic health issues all of my adult life, and the main one- pulmonary fibrosis- is taking its toll on me as i age (40 next month). it’s often very hard to help people understand why i don’t show up to something or why i’m sick- AGAIN, or why i have to choose what events, outings, chores, errands, etc.. that i can physically handle in a day. there is an unspoken- “you’re STILL talking about this? can we say “hypochondria”?” but the spoons- yes! that’s how i have to think about my day, and i would have never come up with that word picture. thank you so much not just for sharing this but for normalizing my life in the body that i have. God bless you richly for this blessing.

Thank you, thank you, thank you… I have been struggling for so long to explain my daily battle with Endometriosis, Post Viral Fatigue Syndrome, Reynauds Syndrome and Chronic Sinusitis. I have lived for YEARS, surrounded by people who either do not understand, or do not care (and sometimes both!).
At last, I have a way of being able to look at things, and a way of encouraging others to look at things, that makes sense and is relatively easy to explain. True, NOBODY can ever really enter my life and live it as I do – but at least I can now give them a fair approximation.
You write with compassion, empathy and genuine understanding. It is a pity that these traits are not infectious (unlike disease, which is, and which ought not to be!)… the more people are opened up to an understanding of what it is like to live one’s life constantly with a disability or chronic condition, the better.
Once more – THANK YOU.

The spoon theory definitely describes how I am right now after being diagnosed with Fibromyalgia. I feel like I maybe only have a dozen spoons per day as I’ll do so very little and then I’m exhausted and wanting to sleep. With that on top of every day pain I despair at how my life has turned back on me. For me it began with IBS and sleep disorders, followed by migraines, and after battling with those for years to get under control suddenly here comes fibromyalgia and undoes 35 years of care and treatment planning that have allowed me to live a normal life. It’s like having several rooms on fire with each fire reacting to a different method to put it out, only you cannot put it out completely so you have to find out what it reacts to and keep it to a small fire, then just as you have all rooms under control someone throws heaps of fuel onto them as well as adding a fire of their own. What’s worse is there is no cure and you don’t actually look ill, just tired and in lots of pain, and people who don’t understand this think you’re just being lazy or not being active enough, or that you’re antisocial and prefer being alone. If you mention it people think you’re just looking for excuses to avoid doing something, or they get tired and irritable of hearing about it all the time because that’s all they ever hear from you, so you feel isolated and despairing that there’s nobody who understands or can help pick you up when you’re feeling at your lowest.

I thought my Gaba was keeping me awake at night so I tried to change this AM. I took it around 1 PM instead. Now I can’t find my nose or the spoons I had left. WHAT I learned ? Spoons are there to use when I REAAAALLY need them..DO NOT waste them on DUMB stuff.

This is the perfect way to explain Fibromyalsia. Thank you so much for coming up with this.

Wow that is awesome I will have to try that out I have CRPS/RSD

Thank you.

Bless you baby I feel sorry that you’re having to go through all this I can remember being 17 and not feeling well either. Almost 8 years later was I diagnosed with multiple sclerosis I darty had a career and two children but didn’t understand why always felt so bad. I can tell you that each day is a struggle I am not going to lie but is a blessing for each day that you have with your family. I am actually better now than I was at the age of 17 and 18 due to medical benefits to have a come about I can’t remember the first doctors I saw telling me it was in my head low and behold it was just not the way they thought stay strong and keep your courage it will all work out and don’t give up on hope and faith I know this will sound crazy but I thank God every day that he gave me something I could handle that somebody else couldn’t it is a big struggle on my family but we all make it worthwhile you and your family will stay in my prayers

Hi Deb, thank you for sharing. I wanted to let you know that I know a lot of how you are feeling. I have an autoimmune disorder caused by the Anthrax vaccines I took while I was in the military. It took me years to change my expectations for myself. But for me, the best thing I ever did for myself was just to let go of who I WAS and accept who I AM, in this exact moment. Accepting who I am right now doesn’t mean I don’t want more, doesn’t mean I don’t want to keep improving. It just means I accept myself exactly where I am at this moment in time. In doing this, I actually freed myself from a lot of feelings I didn’t realize I had and allowed myself to move forward. I had been using a lot of my “spoons” on wasted emotions, like anger, regret, frustration by living in the past or looking too much to the future. I hope this helps a little in knowing you aren’t alone.

I read this and I cry. I have several rare diseases and it’s difficult when people just don’t understand. I used to be jealous of their ability to embrace life with an endless supply of spoons. I no longer feel that way. I know my limitations. I’ve become an expert at spoonology and knowing the costs involved in a task, an outing, even a simple visit by a friend. This is a great way if explaining what we go through daily! Thank you!

Hello Christine and anyone else who might read this. I’m 17 and am coming up on my 2 year anniversary of being undiagnosed. Whatever it is, I’ve seen at least 5 specialists, I struggle just to attend my high school classes and that’s not including the homework. My Dad told me to look up the Spoon Theory and upon reading it this evening I found I could relate not only to the idea of losing my spoons just for small tasks and plotting out my day but for explaining it to someone and not knowing what to say. Being undiagnosed everyone fears the worst, but my biggest fear is not getting to go to college and it’s hard to explain to others that I don’t feel like I’m dying so why should they and that as long as I make the effort to struggle through another day they should believe that I’m still here and will find a way to save a spoon up so I can spend it with them. Thank you Christine for writing the Spoon Theory and sharing your experience.