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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  • Maria

    Christine,

    I really enjoyed your story and the spoon theory and have a new way to explain to people how I feel. I found the link to this letter on a Sarcoidosis site. I have had Sarcoidosis for 14 years and usually just tell people I don’t feel well. I gave someone the booklet about the disease thinking that it would explain what I mean when I say I don’t feel well. I wish I had read this sooner it tells exactly how I feel. I may have to stay in one day in order to go out the next day. I have a couple of friends that understand but even my family doesn’t I hope this explanation will work. Thank you so much for sharing it with the rest of the world it has and will continue to be a blessing to a lot of people, the patients and their families. May I share this link through e-mail with my family and friends?

  • Brenda

    I’ve never seen this before. I have arthritis as well and some days are just too much to tackle. This is the best explanation I’ve seen for describing daily routine. Also, as I work in the mental health field, this is also how people deal with depression and anxiety as well. This really makes every thing click! WOW!

    Christine – I hope you find strength in all the lives you have touched with this explanation. It’s definitely put a new perspective on it for me!

  • Red

    Thank you so very much. I don’t have one specific cause, but a laundry list from head to toe (literally) that make me count spoons. Thank you so much for providing a way to explain to others. Facebook must have hundreds of links to your excellent clear explanation. Bless you..

  • Wow, this was wonderful. I have rheumatoid arthritis and this is similar to how I feel and how I measure every decision that I make. Thank you so much for writing this.

  • MARTE

    Hey, My sister in love sent me this, as a link and from her friend, who has asked us to send spoons to her so she can give it to a friend of hers that has Lupus. I will not look at another spoon w/o thinking of this story. What a great illustration!

    I have several family/friends who have Invisible Diseases and Discomforts of their bodies. They are in need of extra spoons too.

    May you get a whole tableware place setting set and joy and healing!

  • Debbie

    Hi Christine,

    I want to thank you for your story!!! I do not have Lupus, but I do have Multiple Sclerosis. I fell in love and so related with your story the moment I read it. May I please have permission to link your story onto my Facebook page? Wishing you ALL the spoons in the world!!!

  • Robin

    Thank you so much for sharing your story and the Spoon Theory. You managed to convey in a simple yet precise manner what it is like living every day with a debilitating disease. I am a 53 yr. old Spoonie living with MS. The paragraph starting with “Its hard, the hardest thing I ever…” hit me, well, hard. You stated one of the worse things I have had problems adjusting to when I lost who I had always been. If anyone figures it out I would really appreciate knowing how it is done. Having to count my spoons each day has basically made having a long term relationship unrealistic is another kick in the head. Thank you again for sharing your wonderful story. I would love to give you one of my spoons in appreciation.

  • WOW i have heard many people on the Lupus site mention this so I decided to look it up when someone mentioned this site “butyoudontlooksick”

    i get that all the time even from nurses at doctors offices.

    I now know how to explain how i feel on a regular basis! Or i can direct them to this site this was a great story.

  • Monica

    Great analogy. This really describes the source of tension that causes arguments between me and my husband, who has MS. I get so mad when we make plans and he goes and blows a “spoon” on something else earlier in the day that was for his own pleasure and then has to bail on the thing I wanted to do. It’s really a lot like currency and the arguments couples have over spending money, “You spent HOW much on that video game/pair of shoes?”

  • Cheryl

    This is a great story! I have shared it with many of my friends and family. I have MS, and it’s so hard to explain to people how I feel or why I choose to stay home and sleep instead of going out to dinner with them…this story sums it up perfectly. The fact that we “look” fine makes it that much more difficulty. Thank you thank you thank you!

  • Valerie

    Christine,

    Simply put – Thank you for the gift of your story!

    I will be sharing your link with family and friends. Not only for me, but for all the others that I know who spend the day rationing their spoons.

  • I just want to thank you again for this…it has been so helpful in sharing with others what my life is like. It has also changed my self-awareness, and I have been able to budget my energy and pain levels much better by consciously thinking of my ‘spoon count’. Super kudos!

  • Danece

    I have severe lower back problems, my siatick nerve flares up often, I understand your pain, I am a cosmetologist which means that I stand on my feet daily. My pain is not always there, but it is there often enough. Your story has made me understand how people who have a long term illness must feel, I have a co-worker who has a daughter with cystic fibrocis, she has a life expectancy of about 35, when she was born it was about 12, she is now 28. I understand where they are coming from much better now, Thank you

  • Danice

    I hope that mental illness, depending on the person, is not excluded in living with an invisible disability.

  • Bonnie

    I never knew how to explain my husband’s illness to other’s before. The doctor’s don’t know what’s wrong with him, and he has gone from being a healthy, physically active capable guy to someone that it’s a miracle if he can come downstairs and play X-box for an hour during the day. Your spoon theory has been great for helping ME understand better what he’s going through, and to help explain it to others. Thank you.

  • charmy

    was randomly linked to this by friends disgusted with people using this theory to justify, well, laziness and such, and it really touched me. I know from personal experience what they were talking about. I myself am really, really, REALLY depressed. Like, I sleep all the time just to not be awake and cry for no reason, which just makes me mad (as in, just be walking down the hall thinking nothing at all and burst into the world’s most random tears). My point here is that despite it being fairly severe, I would NEVER use your theory for my issues. I am not physically incapable of doing things, I’m just too sad to give a shit. The reason I don’t do things is apathy, not frailty. The reason I sleep so much is sadness, not weariness. I need help and so do other people with this condition, but I have energy buried someplace inside, because physically I’m okay, and it makes me angry to think people use your analogy to justify lack of effort to get over shit (which, when depression is the problem, is OUR big hurdle). It’s not the same.

    But that’s not why I’m commenting, actually. When I read your story I cried (and also noticed you should change “effect” to “affect” hur grammarpanda, I can’t turn it off, sorry). Not just because it was sad in general but because my boyfriend has health issues which DO merit use of your analogy. He is sick all the time (like, throwing up sick) and is often in pain, and sometimes, like your friend, I just get so frustrated, because I can’t understand. For example, when we got free tickets to the museum and were going to have a fun day there, we only spent half an hour there before he got so sick we had to go home. I was so disappointed! I wasn’t MAD, but it was so frustrating (since the tickets were only for that day). I wondered (to myself) why he couldn’t stick it out for another hour at least? But he was just so sick and still wanted to spend the day with me and not go straight to bed, and if we’d stayed any longer he would have had to make the same sort of choice you talked about. Either it was an hour walking around in public, or the rest of the day doing something less physically demanding at home (where there’s also a convenient bathroom). Reading this really gave me a better perspective on this sort of thing (which happens a lot) and why he makes the choices he does sometimes. I plan to have him read this later since it really helped me and I hope it helps him feel better as well. Even if I can’t really ever understand, at least someone does. Thanks for writing.

  • Katie Guenther

    Not a problem at all! Thank you so much!

    Katie

  • The Spoon Theory is an excellent portrayal of how it is to deal with illness. Day to day (spoon to spoon) is difficult for people to understand. Healthy people just don’t get it, sympathy is offered to a degree but understanding is impossible. Everday I manage to push myself and live outside my pain is a blessing. When I feel success in the smallest of tasks, I feel like a superstar, but those around me still question the ‘reality’ of my illness.

  • Marjorie Hufham

    Dam straight, they’ve been given one or who knows how many of your precious spoons! They better feel honored! I have all kinds of stupid crap wrong with me and no one will ever really understand but God Bless You Christine, I believe you come closer than anyone else ever has, you darling woman,You!

  • Robin Marie

    Christine.

    How humble you are. What a Blessing to read this…to know that there is someone who understands what I go through each day. I just block out the people’s words that say I look ‘great’ anymore. They are clueless.
    I have Osteoarthritis, Scleroderma, Raynaud’s, P.T.S.D., Herniated Discs, T.M.J., Acid Reflux, Hypertension, Perniscious Anemia, beat breast cancer, and am not going to list anymore…my list looks hard for believe to many. Every move I take is painful, sleep is painful, and my memories/flashbacks are painful. I will now carefully watch how I will let go of my spoons daily now instead of draining myself more so than I already am!!!!

    God Bless You & thank you.
    ~Robin

  • Janice

    Thank you so much for explaining so well what I’ve been going thru for so long! I have FMS, IBS and diabetes, and each day is a struggle just to do what “normal” people have to do. Getting out of bed is the first struggle, and making it thru the work day is the worst struggle. I’m so glad to know that I’m a spoonie too, along with so many others. You’re an angel.

  • Steph Fennell

    I realise now I am a spoonie too! I have RA and most days I have plenty of spoons but sometimes I am hunting in the cultery drawer so to speak. What a brilliant idea. Good on you Christine!

  • Hi Katie, It is awesome that you would like to share this with your friends and family etc. We just ask that you PLEASE LINK to the spoon theory on our site and not copy/ paste because of copyright. Thanks!

  • Betty

    Wow! That is the most fantastic explanation I have ever read or heard. I have IBS, spondylilthesis, anxiety disorder and stomach problems. These are illnesses you can’t see. I get so upset when friends and family don’t understand. I wish there was some way I could get this story to them so that they would understand as well.
    Useing the spoons as a guide to help explain was a great idea. I wish for you to have as many spoons as possible and for all the people that have to deal with an invisable illness have lots of spoons as well.

  • audrey patrick

    this is totally how i feel—i wa diagnosed with multiple myeloma–a blood cancer. the articulation and imagery are amazing. i have shared this with many people in the 24 hours that i read it–powerful!

  • lcbg

    I’m so glad a friend directed me to this site. I wondered why she had a spoon on her profile, I thought it was because she felt like having soup or something.

    A couple days ago I explained to a friend that I have fibro. I was told that in her experience when she had been afraid to face a problem in the past she would feel sick – and she’d use that feeling to sit on the couch and eat popsicles. And once she faced whatever was bothering her she felt great. Now she says she doesn’t have time to be sick and has no room for it in her life.

    Imagine how that made me feel. I’ve been struggling with that for a couple days now. I thought it was funny how she prefaced it with”not that I’m minimizing fibro etc but..” Your explanation is perfect! I wish I had as many spoons as she seems to have to choose from. Thank you for helping me remember that people have no way of knowing how what they say affects others.

  • Jen

    I don’t have a disease but my daughter has autism and that is exactly how we live everyday. Some days are better than others. Thank you for the inspirational story!

  • Katie Guenther

    I would like to share this on my caring bridge page. If that is ok? I have lupus myself and when people ask me what it’s like I show them this. Christine does a wonderful of describing to people what it is really like to like with this horrible disease. I would also like to print this out. I like to carry it with me and when people ask me what lupus is instead of telling them medical jargon they don’t understand I show them this. They understand these words and terms. They do not always understand the words auto antibodies and pleurisy and so many other words that go along with lupus. Let me know if this is ok? I would like to share this family and friends. Thank you so much! I wish you all the best Christine and I hope you are well! I would even love to talk to you if you ever talk to people who are newly diagnosed at all! Thank you for writing this you are such an inspiration!

    Katie

  • This is an excellent way to help people who really do want to understand the situation of having chronic illness or a disability – thank you for sharing it. I see from previous comments here that you don’t mind linking, so I’ve linked your article on my blog as well as on another support group which I’m part of.

    I experienced pulmonary embolism two years ago, and I’d say pretty much in the beginning I didn’t have any spoons at all. I honestly did nothing but sleep for an entire month. Slowly I’ve recovered and gotten a lot more back again, but still pretty limited compared to my friends my same age, plus I have two little kids. My situation now is less one of being actually sick than living with some level of disability due to lung and heart damage, although I do also have to take medication daily.

    Of course, I don’t look sick to most people, and its frustrating to deal with the occasional judgmental attitude some people have. I’ve had to learn to not allow that to bother me, but I do have some very wonderful people who truly do want to understand, and this is a good way of helping them. Besides that, I think in a way it kind of helps me to better accept my limits myself, as I’m still going through the process of continuing to borrow from my following day until I can’t borrow any more and crash for days or a week because I simply can’t function.

    Thank you again for sharing and I hope that many more people will continue to benefit from this!

  • Lynne

    Wow! So well written and so appropriate to my Temporal Arteritis, Hypo-thyroidism and Rheumatoid Arthritis. For so long I have tried to explain to people how I have had to change everything in my life to accommodate my illness and it is here.
    I wish you all the very best for your future.

  • Deborah

    I was suffering from severe fatigue all the time. I was having trouble getting through the day at work. My hair was so thin and lifeless. I was having terrible leg cramps. I had been to three Doctors who all said I was depressed, after all, I was post menopause. And you have a huge thyroid, they said. I ached all over. The fourth Doctor knew something the other ones didn’t: You can have thyroid cancer and have normal thyroid hormones. The surgeon took 8 ounces of cancer from my neck and told me I had the cancer 5 to 10 years. “The kind you have doesn’t grow very fast.” The leg cramps were due to the fact it had spread to my parathyroid which controls calcium in the body, my bones ached from the loss of calcium which was draining out through my kidneys. I am cured of the cancer, but have left over effects. I understand your theory perfectly. It is really bad when you go to a Dr. and they say you don’t look sick. I am a spoonie.

  • Feel free to LINK to our site! We love to hear when people want to share our site with their friends and family.

  • Sharrie Sexton-Bruno

    I would like to have permission to place the link to your site on my facebook and was wondering if allowed how do I go about doing it. I read your story years ago and having been referring to my days by how many spoons I have often. Not everyone gets it yet but the more people read it the more people will better understand us. I have RA and fibro and have had it for 6 long years.
    Thanx so much for making it easier for others to understand what we go thru even though WE DONT LOOK SICK!!!
    hugs Sharrie

  • Annette

    Christine, your spoon theory is incredible!! It is so well written and I can imagine fits into so many different people’s own illnesses/diagnoses! I have Rheumatoid Arthritis and Coeliac Disease (the latter is not quite as debilitating as the former) as well as fibromyalgia and at times it is hard to make people understand how I feel. Most days at the moment it is just a struggle to get up and go to work, not to mention any extra things I may want to do. A lot of times I dont fancy doing anything after work except going home and crashing! For a long time my husband got very frustrated with me (pre-diagnosis) and once I was diagnosed and he reaslied that I wasnt just being lazy or couldnt be bothered he changed his tune! At one point he was ready to leave me because he didnt realise what I was going through and again just thought I couldnt be bothered. He understands a bit better now but I think that your spoon theory will help more (I hope it does!). I will show it to him.

    My physio also sings me praises when I go see her as she knows how bad I am every time I see her and is amazed that I keep going the way that I do! I am not one to give up easily and know that if I do give up now that is it!

    Most days I do look relatively healthy. Seeing me on the bus or train one would not know of the pain I am in. I did recently have an experience at a busy railway station when a man came up to me (I was sitting in a row of chairs) and asked me to give up my seat for a woman who was visibly in pain and needing to sit down. Now let me mention that I had sat down because I was also in a lot of pain and needed to take some stress off my back, if only for a short time, however looking at me you wouldnt of course know this. Also seated in the other seats near me were I think about 6 or 7 other people, men and women, who all “looked” okay. I stated to the man that I sat down as I needed to and before I could finish my statement he started into one that I needed to do this and help my elders (I am not old, but not young either at 42!). Realising the woman was probably in more pain that I, I got up and gave her my seat. I then proceeded to explain to the man (who was not even with the woman) that he should not judge someone just by looking at them and explaiend that I have illnesses and chronic pain and that is why I sat down. He ignored me and again said that that didnt matter and I should “take care of my elders”. I was so angry at this I just couldnt speak! I was also flabberghasted that the woman whom I gave up my seat to didnt even bother to say thank you and only sat there for approximaly 30 seconds and got up again. It was an experience that I will not soon forget but would not like to remember! Once my husband arrived and heard what I said he wanted to go say something to the man and/or woman who were both long gone!

    Anyway, I just wanted to say thank you for your spoon theory and if you are okay with it I will share on FB and twitter with my friends!

    Hugs.

    Annette

  • Jen

    I have celiac disease, anemia and hypoglycemia. Every day must be meticulously planned out, and if i forget my meter, well let’s hope i dont have an emergency and need it. Grab a quick breakfast? Toast and Cereal, as well as most other breakfast items, are no-nos. Not feeling well? No chicken noodle soup. Tired? well, thats a constant part of life. Not a second goes by where I am not exhausted. plan on skipping a meal? not happening, because if i do, ill pass out. dinner is pasta? well, better find something else to eat and oh, you cant use any silverware or appliances that gluten was prepared in/with. If there is even a crumb of gluten in my food, i can expect to be violently sick for a few hours. Processed food? Oh, better check the label. Want a big mac? Cant….cant eat the bun. Im 27 and was just recently diagnosed(within the last 10 weeks) with celiac disease after being sick for several months. I cant say how many times I have passed out from low blod sugar. Im always exhausted but have to keep going because I cant quit on school or i wont graduate in June. College? better make sure you have the money to buy the special foods necessary with celiac. that meal your friend is having? oh, theres croutons in their salad, so you cant share.
    The theory isnt a direct relation, but its the same idea.

  • Vicki

    Hi Christine,

    This spoon story has had me in tears from start to finish. I have R.A and FMS and the only people that “get” how I feel on a daily basis are the fantastic people I have met on line who suffer from similar diseases.
    from getting out of bed in the mornings until I get to bed a night, everything is a struggle. Your story is a perfect portrayal of a day in my life.
    Can I please have your permission to share a link with my FB friends.
    I wish you all the spoons you need.
    Take care ((((gentle hugs))))

  • Karen

    What a fascinating way to share one’s struggle with other people who care or are curious. I have an incomplete spinal cord injury and have mobility issues, nerve pain and muscle weakness – so each day I have a different number of spoons in my account. However, I strive to smile and accomplish as much as I can with my affliction. This is good to share with everyone fighting a battle – or our allies. Thank you.

  • Amy LeBlanc

    Thank you for sharing your story. Just had my husband read it and he looked at me with amazement in his eyes, he finally understands more of what my days are like. I have RA, Fibomyalgia and also have been blessed with a son with sever autism. So, not only do I have to use my spoons sparingly on myself but I have to always remember to save some for him and his needs.
    I plan on sharing your link with my friends and family so just maybe they can begin to understand.

    Amy

  • Leonie

    Thanks for putting it into words. I have SLE, Raynards, IBS, RA, seizures. It hurts me when I hear people say that I look so healthy. If only they knew that it took me 2 hours to get ready for the day and that my shirt is only buttoned today because I never un did the buttons the last time I wore it.

    Leonie

  • liz miller

    I enjoyed hearing your story today at the Lupus symposium in Atlanta.

  • Charlotte L. Prosser

    This is my new RA life. in Dec. 2009 my world starting changing with the diagonises of RA, Doctors felt I had RA for awhile. I wrote my friends and told them to please read this. Sure hope they do. Thanks for putting it into words. I had my husband read it right away and now he “gets it” I can’t thank you enough.
    Charlotte

  • Bev

    Thank you for this post. It mimics my lyme disease course and where I am now. I am often out of spoons. This will help explain to those friends and family about what I am going thru.
    Bev

  • cbw

    Dear Christine,

    I wish you ladles for spoons..

    Thank you for allowing me to LINK this to my friends!

  • Thank you for writing this honest, frank, and helpful essay. It puts so much into such clear and important perspective. I will share this link through my FB and Twitter — with thanks and appreciation.

  • Marilyn

    Hi Christine,

    Thank you so much for writing this. I have MPA vasculitis (microscopic polyangiitis) and your spoon theory is exactly right on. I have linked it to my facebook page for my friends to read. My husband doesn’t have facebook, so I have printed of your pdf version for him to read.

    We have a yahoo group for those of us with MPA and our families. I will try and link it to there, but if I cannot, may I please have permission to cut and paste it to that group. I know it will hit home with all of us.

    Thank you.

  • Sue

    Hi Christine

    I cried all the way through your story, it made me realise what I had been trying to explaint to people for the last 6 years, having been diagnosed with Multiple myeloma. It is a perfect description of what becomes important.

    I hope you stay ahead of your battle

  • Kerrie

    I was diagnosed with SLE last month and was diagnosed yesterday as also having a fairly severe case of fibro. It was recommended by my doctor to find this story on-line and to read it because it would help me understand it better as well. I immediately started crying when you handed your friend the spoons. This was amazing and definitely an eye opener for me…thank you so much for sharing your story and helping others to explain and understand Invisible Diseases. I am so grateful for people like you! Thank you Christine….thank you.

  • YES. Thank you for asking. We LOVE when people LINK to this site or this story etc. WE just don’t allow cut and paste without a direct email from the author saying it is ok. (no cut and paste) But we love LINKING and sharing with others! 🙂

  • Dan

    Great story! I don’t have Lupus but I cope with Reiter’s syndrome and apnea. This story helped me realize how blessed I am to accomplish as much as I do.
    Thanks for publishing your story.

  • Please can I share a link to this page on Facebook and Twitter?

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