The Spoon Theory written by Christine Miserandino

 

Please take the time to read Christine Miserandino’s personal story and analogy of what it is like to live with sickness or disability.

Click HERE to download “The Spoon Theory” in PDF format.

The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

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  • Beverly Marsh

    To my dear friend I know that you have had many days with a lo of these symptoms but didn’t understand why you were always sick with it. This letter has enlightned me with how much so many people have this and what they my go through in their later year. I liked the spoon idea which might help a lot of people understand just what Lupus is and how debilitating it can be. My prayers are with you everyday!

  • Wow. This is a remarkable article. I came across it as a result of a friend with a TBI and PTSD, but it works for any kind of chronic “invisible” illness. Thank you for giving us a glimpse into your life. 

    Blessings, 

    Casey

  • Today on The Revolution, when you and Toni were discussing what parts of your body are affected by lupus, I didn’t feel alone.  Christine, like you my lungs have been affected.  I did not know the symptoms of lupus until my family doctor ran tests to see why I was not get over bronchitis and why I had gained 5lbs in fluid overnight.  The next few days was rough waiting to see what was wrong.  She had mentioned lupus but we didn’t go into detail.  Well that changed when she called me personally and asked me to come to the office.  She said she had never seen that many exclamation points next to someones blood work before.  I was diagnosed on March 9, 2012 and then it was reconfirmed with a rhuematologist on March 26, 2012.  

    Like you I am struggling with saying no.  This biggest thing for me has been to ask for help coaching my daughter’s fastpitch softball team.  This is something I have done since she was 9 years old and she will be 18 in November.  Luckily I have great friends who are going to help myself and my husband.  I know that every practice and every game I will be completely out of spoons, but this is my last spring to coach since my daughter will not play next spring because she is preparing for college.  I have a group I have started on Facebook for my friend and family called LUPUS WON”T WIN.  I shared your spoon story tonight with all of them.  Thank you again for sharing your story today.  

    Sincerely
    Brandee Reynolds
    SW Missouri

  • Wiscats

    Samanthe, it is a shame that you are ignorant about what Fibromyalgia is.  It is something you should educate yourself about before spewing such utter vile, hurting people who are suffering from a real physical problem.  You need to speak with rheumatologists, you need to read the latest research on it, and you need to know what the definition of syndrome is.  (Are people with Down Syndrome simple mentally ill?)  Please keep your uneducated opinions, because that’s all they are – opinions – to yourself rather than risk hurting people who are already struggling.

  • Wiscats

    This hit home for me.  I have rheumatoid arthritis and fibromyalgia, both of which mean I “don’t look sick.”  I can relate in many ways to the struggles of every day and liked the spoon theory very much.  Thank you.

  • Schbriggs10

    Samanthe.. You have got to be kidding me… I have RAD and FM.. There is nothing psychological about FM..I think you should be careful of the words you allow to slide past your lips. I pray that you never have to suffer the daily pains that we suffer… I guess my head says that I would rather be sick than spend time with my wonderful husband,children,and adorable grandson.. I pray that if you don’t have a clue,that you get one soon.. Everyone is entitled to their opinions,but remember to be mindful of someone else’s PAIN,FEARS,SORROWS,ETC.

  • Carol Lepard

    Thank you!  I also want to say that I also suffer from severe atypical migraines and one of my triggers is the FM and that “normal” migraine medication just makes them worse…I have this diagnosis from a major hospital’s Headache Specialist from thier Headache Clinic.  These migraines can be very quiet and even have mimicked strokes so that I have lost use of part of one side of my body or the pain from them can be severe enough to put me down in a dark room for days.  Yes, I know that my brain chemicals are all wacky but that does not mean I have a psychiatric problem as one here seems to think.  Not all “brain” problems are psyciatric.  I am also extremely sensitive to the sun on days the brain chemistry is “off” more than normall and even normal sunlight can trigger my migraines.  This means I have to be very careful about being in the sun for too long.  Oh, and another thing about FM that doesn’t get talked about too much is our memeory problems.  Most people with FM have problems with thier Short Term Memory of one degree or another.  I happeen to have it pretty bad….I have to write notes to myself just to make sure I remember to do something…and that isn’t always a guaranty that I will still remember to do it….sigh

  • Carol Lepard

    I really beg to differ with you here.  I was diagnosed with FM almost 30 years ago and there has been a LOT of study on this DISEASE since then.  They have found out that one of the reasons we have tired muscles all the time is that the chemical that tells the muscles to relax does not work…hense our muscles NEVER turn “off”….it is impossible for someone with FM to truely relax!  Have you ever tried to sleep when your muscles are jumpy?  That is one reason we have difficulties with sleep.  I have been on a sleep aid since I was diagnosed just so I can get a few hours sleep.  The other thing that is really bad about muscles not turning off is that when you do get injured…even as simple as a sprained ankle it can take 3-4 times as long to heal as it would take on a “normal” person.  Many of us who suffer from FM (and beleive me…the pain we have is REAL, not in our heads) also have other conditions that have been proven to go hand in hand with FM…many of them treatable with the “proper” medications…..if you aren’t allergic to them.  A LOT of us also suffer from extreme cheimical sensitivies…and this includes medication.  There is not even ONE pain medication that is on the market right now that I have not tried and and an allergic reation to…you ever think how scarey that can be?  I think YOU need to do a bit more research on what you are talking about before you continue to disparrage all of the people who have FM!

  • Ernstmulln

    There are many more of us who sympathize than there are people like S.  Think of us and feel our good thoughts wash over you.

  • Harmony

    Get a life! I have recently been diagnosed with FM and you would not believe how relieved I was because I thought I was going troppo.  I have a severe spinal disease, have had gall stones, 4, yes 4 close calls with cancer (am only 47) and I am a VERY positive, upbeat person.
    How dare you come here and say that fibro is a mental illness! It is a debilitating, awful and extremely painful condition and until you walk a mile in any one of our shoes, you should just shut the hell up and get off this page. You obviously do not have one shred of sympathy in your body.
    I hope that Karma comes and bites you in the butt real hard and if you ever end up with a debilitating illness that you get it back twice as hard. How dare you! Grow up and get a life and leave those of us who plod on day to day with agony alone. Go bother someone else you cold, unfeeling wretch!

  • Guest

    I love this spoon example.  I am healthy, don’t have these issues, but I can see the genius in the spoon theory.  I will remember it when dealing with friends that do have chronic pain or illness.  Just an observation, maybe its time to quit beating up on Samanthe.  I haven’t read all the thread and don’t intend to.  I read enough to know that some people were inflamed over what she said.  You won’t change her mind and she is entitled to her opinion. So…let it go.  If you are sick, then you don’t need to spend that spoon.  

  • Sarah

    This is wonderful and I see myself using it alot in future.

    Thanks also to Samantha for clearing up that it is we “fibros” who are the attention seeking whiners, otherwise I’d have been tempted to assume that it was the person who went to a public forum to complain that their illness is worse than mine, who was seeking attention! 🙂

  • All4upups

    This is very true thanks for sharing…

  • Nathan Caplan

    presenting a theory as a fact. basic schoolboy error. now be a good girl, and run along and play. the grown ups are talking.

  • Wyzwoman2001

    Thanks so much, I knew I was doing soething to coupe with my PPS but never could explain it to myself or others.

  • Bryan

    My sister forwarded this link to me. She was recently diagnosed with Lupus. Living in a different state than she does, it’s difficult for my mind to even try to believe that she has this. She has always been very healthy. This story will help me quite a bit in accepting that she is actually sick, and that she only has so many “spoons” to work with on a daily basis. Thank you for sharing your story, not just for other people living with this disease, but also for those of us who, try as we might, will never fully understand what our loved ones are living with.

    @Samanthe.. In my long life, I have learned that it is not wise to believe that you know anything about anyone else’s situation, whether that situation is living with a disease or simply a personal problem they are going through. Yes, there have been times when I have been duped (for lack of a better term), but that will not prevent me from taking someone’s word at face value if they are living with a disease I don’t have. Being perfectly healthy myself, it would be unfair, and disrespectful, of me to make any judgement about a disease that I do not have to live with.

  • I have wondered how to explain it to people… thank you for writing this so perfectly! 🙂

  • Living with MS and Chronic, intractable Migraine Disease I have heard, “But You Don’t Look Sick”, too many times to count.  It’s so cool to find so many in the same place, well, that understand anyway.  Living with chronic pain and disease is really tough! It challenges your being to the core in a way that you just can’t understand unless you live with it.  I sometimes wish people could take a taste of my pain for just a day, to see what it’s like.  They’d realize how strong I really am! And how Lazy, I am NOT!

  • LG

    I would suggest you now watch this video from Stanford explaining FM. It is 45 mins long, but it will explain to you what is PHYSICALLY going wrong with a person with FM. It has been medically proven FM IS NOT psychosomatic. Like many other disorders FM can be adversely affected by stress etc, but it is not psychiatric. Keep up with the research if you want to come & voice an opinion such as this. 

  • Grbr Family

    Oh, and just to type a memo. I cannot feel the tips of my finger pads any longer. I constantly hit the wrong keys and must go back and change them. I cannot wait to buy my ‘spoonie’ poster.

  • Dominiquesouza

    I love this story. I have never been able to explain to my friends and family about my chronic pain. Thank you! I feel hopeful.

  • Slberto411

    Fibromyalgia does NOT mean muscle weakness. Myasthenia Gravis is “grave muscle weakness”. I feel sorry for you. You sound full of hate, anger and full of meaness. You reap what you sow; I think this happening right now, and with your lack of insight it will never be your fault.

  • Hacked off by ignorant people

    Samanthe
    Never in all my life have I ever heard such complete and utter rubbish. I wonder if you have even bothered to think about the consequences of what you say.
    People have come here to read other peoples experiences and chat to people who may not have the same illness as them but because they “don’t look sick” have the same day to day issues as them with people not believing they are ill. I personally lost a very well paid job in a bank due to illness I was misdiagnosed with ME and fibromyalgia now after 6 years of hell and people like you I have been diagnosed with Lupus sle. And because it hasn’t been treated and has been quietly damaging me inside for the last 6 years I am now waiting to find out how much damage has been done. You won’t ever find me saying that fibromyalgia  isn’t a real physical illness because if what I lived through is how people who really have it feel. I don’t envy them. Even though I may very well be facing a death sentence with lupus there is more help for me than the fibromyalgia suffers. By the way I have no mental health issues at all I have my son who is the best antidepressant in the world.

  • Mcdube10

    I had a friend with lupus, I never understood her but I do now.  That was a brilliant explanation.  Thank you.

  • Johorsey5

    I do not have a co-existing mental diagnoses. I do have Fibromyalgia. I do NOT demand or take narcotic pain meds. I take Tramadol, and Vitimin D. I am in pain and the pain is real. I have not been this angry over someones uneducated, rude and cold hearted comments in a very long time.

    I work 40 hours, work on my on my car, keep my on house, then I go over to my best friends house who has been treated for throat cancer and do what I can for her, even though I am in pain, and many times so tired I don’t think I can take another step.

    I may not look sick or maybe those of us with Fibromyalgia do not fit into your catogory of sick, so maybe you should just keep you comments out of something you know NOTHING about.

  • Jo

    I would give any thing not to have Fibromyalgia. I did not ask for it and certainly do not want it.  I find your comments very cold and harsh. I am in pain almost every day. As with Lupus Fibromyalgia is NEVER going away, unless they find a cure.  Our syndrome is real and those of us with Fibro will have to live with it for the rest of our lives. You would not want someone to tell you your disease is not real or that “It is mass hysteria, secondary gain from the “sick role”.  I am sorry for your illness and I hope your illness will open your heart and your feelings to be more compasionate to others who are suffering even though there illness may not be terminal. We do suffer every day, we are human to and do not deserve to be talked about by you are any one else. 

  • Guest

     Your posting explains everything.  Your information is SO outdated.  I think it is time to throw out your old textbooks and start doing some up to date research. (while researching, look into ways of acquiring some human compassion.)

  • Stephen Andrews

    To Army Veteran Momma – Thank you for your service Warrior.

    Ma’am, With all respect I believe you are misunderstanding both Fibromyalgia and psychiatric illness. There are most definitely physical characteristics to mental illnesses.  As someone pointed out – more and more direct links between the mental and physical are discovered as understanding of these illnesses increases. 

    I too suffer from combat induced PTSD and while I am overjoyed you have no idea what this truly means and probably have never woken up screaming for the dead you cannot save, the warriors you’ve held in your arms as you watched the light of life fade from their eyes or those lives you’ve ended, let alone do so nearly every time you close your eyes; there is a hard-wired physical component to this “mental illness.” 

    Therapies like EMDR are designed to re-align the neuropathways that become damaged (for lack of a better descriptor) as a direct physical intervention for PTSD. 

    Just as I’ve undergone countless surgeries, therapies, hyperbaric treatments and physical rehabilitation so to goes some of the treatment for PTSD. 

    The article above is a great example of how any consuming illness is neither physical nor mental but all encompassing. 

    Just as the PTSD is treated physically with EMDR, so too the physical wounds produce mental affects. It’s hard to describe to someone who has never been shot, or stabbed or blown up – but the resulting physical trauma absolutely produce mental trauma and vice versa.

    I can only guess at the effects Fibromyalgia or Lupus must produce on someone but I can assure you – it is by no means all in someone’s head.

  • Stephen Andrews

    Thank you for the great post, it’s hard to explain to folks why we feel and are the way we are and it’s refreshing to read your post along with most of the comments and know there is understanding.

    I wish all a better day than they expect.

  • Guest

    Christine, thank you for your “spoon theory”. I just happened upon this site, while looking for a good support group for RSD/CRPS. I got it as a result of a back surgery. I have also suffered from FIBROMYALGIA since I was a little girl. I would love to continue to use this site but since you allow comments that are negative, and downright libelous  by posters on this site, I won’t be back. Most support groups are kind enough to place limits on the kinds of posts allowed. Thank God for them. I get enough doubt and confusion from family, I don’t need to find it where I go for support. (Samanthe – all I will say to you is that we will all have to answer to God on our judgement day for the things we say & do that offends him or others – I pray you get a reality check real soon. I’m sorry your “illness” has made you so bitter, not your lupus, your anti-social personality disorder. Get help, you need it!) To all of you others, I hope you find comfort from somewhere! God bless all of you!

  •  Mona, twice this week the verse, 2 Corinthians 12:9, has jumped out at me from two different books. Now I catch myself repeating throughout the day, “”My grace is sufficient for you, for my power is made perfect in weakness.” While my body may not work like I want it to, I can still have a smile on my face and a song in my heart. Yes, His grace is sufficient!

  • Linda Megdanis

    ARMY VETERN MOMMA,
    FIRST, LET ME THANK YOU FOR YOUR SACRIFICES AND YOUR SERVICE TO YOUR COUNTRY SND TO ALL OF US. I KNOW THAT I SPEAK FOR MOST OF US HERE WHEN I TELL YOU HOW GRATEFUL AND PROUD WE ARE OF YOU. I HOPE THAT YOU ARE RECEIVING GOOD QUALITY CARE, AND THAT YOU WILL FIND SOME RELIEF FROM THE PAIN YOU ARE FEELING…PLEASE EXCUSE “SAM” DOWN THERE SOMEWHERE…SHE HAS THIS THING ABOUT WHAT IS REAL OR WHAT ISN’t. PERSONALLY I THINK PAIN IS PAIN…YOU GOT IT, DEB HAS IT, I HAVE IT…WE ALL DO…DOES IT MAKE HER PAIN ANYMORE IMPORTANT OR TRAGIC THAN ANY OTHER? I THINK NOT…SEEMS TO ME LIKE A VERY BITTER NEED TO BE RIGHT…NOW, ISN’T THAT SOME KIND OF MENTAL THING? 😉

  • Linda Megdanis

    NOT SINCE A FAMILY MEMBER SPOKE TO ME IN THIS MANNER HAVE I HEARD SUCH “PIFFLE”. WHO ARE YOU TO JUDGE ANOTHER’S PAIN? & WHAT MAKES YOU THIMK THAT THIS GREAT VETERAN OWES YOU AN EXPLAINATION FOR HER NEUROPATHY? WHERE DID YOU GET YOUR M.D.? PLEASE GO SOMEWHERE ELSE & STIR YOUR POT….

  • Linda Megdanis

    THANK YOU CHRISTINE…I’M SITTING HERE CRYING…AND I HAVE USED UP ALL MY SPOONS TODAY…WHICH IS WHAT HAPPENS WHEN I HAVE TO EXPLAIN TO SOMEONE WHAT IT IS LIKE TO BE SICK…FOR THE 100TH TIME…NOW I CAN GET THIS POSTER AND POINT TO IT ON THE WALL, THUS USING JUST ONE SPOON. NOW I AM GOING TO TAKE THAT ONE SPOON I HAVE LEFT AND GO LAY DOWN AND REST. 😉

  • Kachinkie007

    you are vile.  You are hateful because others aren’t as “sick” as you? I believe you have the worst mental illness of anyone.  I actually feel sorry for you.  May your venom for others not detour your healing.  Stress and angry feelings only feeds your illness.  Not a smart approach to life and healing.

  • Kachinkie007

    You know, I have several wegener’s friends that have developed fibro as well.  Are you saying they really aren’t experiencing all that pain????  REALLY?  God help you.

  • Kachinkie007

    I have a VERY REAL physical illness.  It’s vascular and autoimmune in nature.  It’s in medical books although it’s still rare.  Look it up, Ms. Know it All, and then tell me who ihas the psychological disorder!  Wow, talk about a narcissist, nescient fool.  Also, physical pain will cause psychological problems.  I dare you to endure one day of what so many on here go through.  I have Wegener’s granulomatosis which has caused type II diabetes, severe joint and muscle deterioration due to being on chemo and prednisone for over 7 years, and depression (gee, I wonder why??  I had to leave teaching, lost my home, independence etc).  You, my dear, are sicker than anyone on this site in my most humble opinion.

  • Josh

    Biomedical engineer spoonie here, marrying a neurologist.  I would just like to check in and clear something up.

    Fibromyalgia is considered in the medical and scientific community to be musculoskeletal or neuropsychiatric disorder. The fact that the word “psychiatric” is present does not mean that it’s “all in your head”, in the same way that schizophrenia is not “all in your head” because it is a psychiatric disorder. There are real chemical imbalances involved, and just because we do not fully understand a disease does not make it an illegitimate one. You cannot will away fibromyalgia.

    Current theory also posits that fibromyalgia is due to a difference in brain structure between patients and control subjects. I would also like to point out the fact that the implication of the word “syndrome” was used incorrectly here. If a disorder is classified as a syndrome, it does not mean that there is no illness or disease. This is clearly shown in the case of SARS (Severe Acute Respiratory Syndrome) and Down Syndrome. The word syndrome simply means an association of symptoms or clinically recognizable features.

    Fibromyalgia is not a mental illness. Period. It does not affect cognitive function in the same way that bipolar disorder, schizophrenia, or depression would. It is a physical/neurological illness, which has some psychological comorbidity but is itself a physiological condition.

  • Csalmoni

    Wow, think I will save my last spoon by just not responding.
    My mantra, exhale love. Exhale love. Exhale love. (Rumi).
    Feeling a little better now.

  • Sammy

    My god Samanthe, you have no idea. Fibro is NOT a mental illness (probably would prefer it was to be honest) it is a Neurological illness. I have had Fibro for as long as I can remember. We know very well that our brains do not talk to our bodies correctly, which results in pain everywhere every day, its not in our mind, its our mind not working correctly with the rest of the body. If your brain was constantly misgiving information to your nervous system and muscles, you would be in pain, and lethargic all the time like we are. And just because some people with the condition cannot help but to literally give up (because sometimes it can all just get too hard), doesnt mean you can generalise all of us. 
    You have no right to negatively comment on a condition you obviously have no idea about.

  • Yvonne Herrington

    How do I share The Spoon Theory with my family to help them understand what I suffer through having Psoriatic Arthritis?

  • Samanthe I have no pysch issues and have Fibromyalgia and lupus. I am one of the most POSITIVE people in the world and I love life and live it to the fullest. I feel so sad for you and this is why. I would never go to a site full off people that have a chronic illness and judge them unless I was I was unhappy with myself inside and had to point a finger at someone and tear them apart to make myself feel better. You are the one with a psych issue. You are insecure and have to bring others down to make YOURSELF feel better. I will keep you in my positive thoughts and hope that some day you do not have to make others feel bad to make yourself feel better!  

    Ignorance and lack of education leads to discrimination, fear, and hate. Compassion and love brings you joy, happiness, and abundance! 

  • Gapatty

    Samantha, quoting from books written in ’97 & ’98 shows your ignorance. You wouldn’t rely on medical knowledge that outdated for YOUR illnesses. Grow up and show some compassion. Your vitriol is unbecoming

  • Cindersofstamford

    I have both fibromyalgia and lupus as well as other stuff. I do not belittle any illness. As for fibromyalgia not being life threatening you are very very wrong. In the uk we have very little support and I have friends with fibromyalgia and several have commuted suicide why? Because they can no longer live with the pain. Please, please do not belittle these people with your heartless comments. Illness is illness whatever we have whether it’s mental (I do not believe fibromyalgia is) or physical. I sympathise with everyone who is ill stop being so bitter there are people worse than us think how you would feel if they belittled your illness you should be ashamed of yourself

  • Nikkibaldwin78

    OMG Samanthe take a chill pill and get down off your high horse! How dare you belittle other peoples pain and suffering. You are vile !!

  • Dixmaestro

    Almost all psychiatric illnesses are caused by a malfunction in the brain. The brain controls the rest of the body. If your kidneys fail, you are able to get dialysis to perform the function the kidneys are supposed to do. If your brain fails, surprise – you are dead.  The brain can cause any part of the body to be in pain, or to cease functioning. That does not mean that because the brain has caused a physical discomfort or dysfunction that the person is not ill. And, your use of the term “fibro” is demeaning and insulting.  How about they refer to you as a “lupo” or some other equally denigrating term?  I do not have fibromyalgia, or lupus, or MS, but have osteo arthritis in both knees and almost the entire length of my spine (much of that the result of damage from a car accident.) I continue to live my life with the pain and don’t let it control me, but not everyone can deal with chronic pain whether from a physical or “brain-controlled” illness. Because my arthritis is not likely to be terminal, that doesn’t mean it isn’t real. Not all diseases are terminal, but can be just as life-altering as those that are.  
    I hope you noticed that I in no way criticize you for being ill with LUPUS or ESRD, but nor do I criticize anyone with psychiatric based illnesses. All have some effect on the person who suffers with them, and if you are not in their shoes, who are you to criticize how they walk in them?
    As far as anything being terminal – I have yet to know of any person who has been granted immortality. We all die, just at different times, in different circumstances, as a result of different causes. Life is terminal. 

  • Cindy

     I cannot link friends and family to this article because one person – Samanthe – posting is so out of line that I refuse to have anyone possibly read her non-sense and believe it.  If she used her anger and spite for good she may enjoy more spoons in her life.  I have wasted a spoon already today reading her vile comments and refuse to use another to respond to her.

  • Dianne

    I have had CFIDS since 1993 and symptoms for much longer than that. Although many of the aspects of this “syndrome” have been addressed (toxic level of mercury, heart arrhythmias, low thyroid, etc.), I still have to count my spoons. I really appreciate Christine’s article, which decsribes so clearly so much of what i experience from day to day. No, I do not have something like Lupus for which they have found a cause and medications. Some day, the researchers will finally discover what the foundational causes for some of these”somatic” illnesses are. In the meantime, don’t discount the reality of lives which have been so severely limited. I’d write more, but my spoons are in short supply today. Still paying for some fun (air show) i had three days ago. 🙂

  • Diannan1

    If you don’t walk in my shoes then you have no right to judge me.

  • Wendy

    I am so thankful to have found this analogy.  Anyone who suffers from any chronic
    illness can relate to this.  What a wonderful way for people to see what we go through on a daily basis.   Kudos!!!

    I just found an awesome site for info on CFIDS…..http://www.cfids.org/about-cfids/default.asp

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