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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  • Becca Tsarina

    Hi i found the spoon theory through a friend and it it’s
    been a revelation and I really wanted to pop by and say thank you, so here I am.
    I have dyslexia and dyspraxia so I’ve always struggled to explain how I’m
    feeling accurately (even before the diagnosis’s) especially as I have
    depression, long-term insomnia and generalised anxiety which leave me
    emotionally and mentally drained most days. On top of this I have a vitamin D deficiency,
    (undiagnosed) arthritis (I’m 20 and they refuse to actually do anything for me
    besides throwing painkillers at me regardless if I am trapped relying on a
    walking stick and/or shop bought arthritis splints for half the year or more) and
    a gynaecologist who thinks that a birth anomaly (not being shaped normally on
    the inside) which affects my pain levels
    at certain times of the month and what I can actually do with my body in and
    out of the bedroom (trying not to be too blunt) can be treated with weight loss
    all of which tend to leave me sore, tired and frustrated with myself, the world
    and everyone else in it (especially some doctors and nurses).

    What i love about spoon theory is that it covers emotional,
    mental and physical health. I can talk about how i can’t carry enough spoons
    for the day so I’ll probably be cutting it short (physical), couldn’t find all
    my spoons this morning (depression) or how i lost a bunch of my spoons (random
    anxiety), i know they’re here somewhere but i couldn’t find them this morning
    (waking up anxious) or were stolen (I’ve been triggered by something or being
    around people who drain me emotionally “spoon thieves”) or I need to wash up (I
    used all my spoons and need to rest i.e. Do the washing up before I do anything
    else at all… otherwise known as crashing/the only cure for chronic insomnia/exhaustion
    getting the better of me). Thank you so much for coming up with it, it really
    makes communication easier for me!

  • Rabbits517

    Been there. It’s brutal, especially when your friends “tire,” of your not keeping up with them and you end up very, very, alone. I’m currently seeking support in my area. Good luck to you, may you have plenty of spoons today.

  • Rabbits517

    Right there with you!

  • Rabbits517

    I have panic attacks, anxiety disorder, depression too. In addition to Chronic Pain Syndrome, Female Pelvic Lichen Sclerosis, TMJ Syndrome, Osteoporosis (since age 27, now 40’s,) herniated discs, sciatica, T-7 spinal comp fracture, Fibromyalgia, and like many others, confusion, somnolence, constipation, from side effects from many meds. Despite the physical issues, I’ve found it especially hard to have a mental illness, as that can be truly unseen. I had depression and anxiety long before my physical issues manifested, and I looked like a normal, pretty, healthy, young, blonde. I substituted emotional emptiness with buying clothes and jewelry, so I always “appeared,” fine. It was hell. I was dying inside, but when I was down, friends told me I had no reason to be sad, to stop self pity. If only I knew my neurotransmitters were way out of whack. (Plus a bonus case of PMDD; hell every month, also with surgeries for endometriosis,) It took several suicide attempts to have my family get me help. I’m grateful to be alive, despite all the subsequent injuries and illnesses.
    For now, I set my alarm an hour ahead, reach to my night stand for pain meds and a stimulant, then sleep for another hour, thats the only way I can get out of bed, if at all. But so you know, mental illness can be debilitating, and you are not alone. I need physical therapy but agoraphobia has been a big problem, not to mention the agony of travel, preparing food,( I also have multiple allergies,) showering, finding clean clothes, ..there are rarely enough spoons so these things dont happen on the same day. I spend days at home, alone. The shower literally hurts. But I keep trying, like we all do, the best we can. Keep counting those blessed spoons!

  • Rabbits517

    I agree you are quite I’ll and am sorry for that. I suffer, too. One day, a good day, I had the strength to take the bus to the pharmacy a few blocks away. At the stop, a man said, “you don’t look like you need no cane!” I wanted to clobber him with it, but I needed it for balance as nerve damage makes my feet go numb sometimes. On a good day, I put on some lipstick,and if its not too painful, brush out my hair, put up in a clip. I have comfy but decent looking jeans for the one day out of 5-9 days that I leave the house. It makes me feel good mentally to appear “nice,” like my old, active, pretty, self. I must sit close to the front to lessen the steps off the bus. If someone is in the handicapped seats I’ve had to ask, even argue to have someone “not disabled,” to please let me sit. Often by then the bus has begun moving and its all I can do to not fall. Ive had to wear sunglasses to hide my tears of anything from pain, anger, moodiness from the many medications I’m on, even shame for pushing myself too far when I should have stayed home, or prepared better. Once in awhile I make it. But the next few days is rest, & recoup. I have to keep telling myself Im not the same person, and now instead of a list for the day that is never completed, I will plan accordingly, picking my spoons carefully. I am grateful for what little spoons I do have, and try to ignore ignorance from people who just dont get it. Bless you, and while some are sicker than others, only you know how you suffer, and most folks here are supportive of you. Stick with those that believe you, forget the rest. We are okay with those times we simply have no more spoons.

  • Rabbits517

    Hos beautifully worded. Bless you and I send healing, pain easing vibes her way. I am I’ll but have more spoons than others, I am humbled by what you and others have shared..I am grateful for the days I can do one or two things before giving in to agony and nerve weakness and take meds that only sedate at this point. It’s like hearing myself breathe is so painfully loud sometimes. You’re not alone, we are here for each other, thank you for sharing.

  • Rabbits517

    Guest- How dare you belittle someone’s experience with illness by comparison with another disease, let alone your own woes for helping an ill loved one? Granted, caretakers deserve some support as sharing a world with someone sick is challenging emotionally and often physically, yet until you are the one in a position where you have little or no control over the limitations your illness has put upon you, your suffering is an entirely different experience. Not all illnesses are the same. Not all people are physically or emotionally designed to respond to one diagnosis in an identical way. There is simply no room to judge anyone until you’ve experienced what they have. Since you cannot literally do this, at least have the decency to acknowledge one’s experiences as valid. Comparisons aren’t helpful, as everyone is different, fighting their own battles. Please get support from a caregivers group, as clearly you are overwhelmed. Judge not, until you own the blisters from walking in my shoes. Trust me, they hurt worse than you could ever imagine. The people clinging to spoons in any disabled, limited, debilitating manner are to be commended, as some barely have the strength to do so. We fight shame enough as a normal human emotion when our abilities are robbed from us, so please don’t be so callous as to try to add more.

  • thank you for sharing

  • Lisa

    While I understand your sentiment, I must admit being diabetic isn’t half as difficult as dealing with what a lot of the people on this site deal with. If I had a choice between my health and diabetes, I would pick type 1 diabetes any day of the week. You see before I got sick I put myself through college working 2-3 jobs. I then went on to LPN school (40 hours a week) while working 48 hours a week in a hospital. I also worked my way through RN school. At least once a week (if not twice) I would get up at 6:30 am, go to school, get out of school, get a bite to eat, go to work and work until 7 am. I would get a bite to eat and go to school until 3 pm. I always found more spoons. Now I am one of those people you talk about who has to count their spoons. I am married and have a 4 year old daughter. Magically enough if I don’t count my spoons and I don’t get my rest, I don’t have energy to function. I had more energy while in school and working full time than I do now if I don’t get a nap that day. Sometimes I require a nap after a simple task of taking a shower. I developed Bronchitis two weeks ago. That consisted of a trip to the emergency room because I couldn’t breathe. None of my medications were working. So…we got to follow the routine. Blood work, xray, ekg (to make sure my heart was still working), then try the breathing treatments, monitor the heart because the updrafts make my chest pain even worse. Then we start the IV medications. you see, the difference of what you live and what I live, is the fact that walking up a flight of stairs won’t put your (or your diabetic love) on the ground gasping for air…but it will me. Walking across my house (which isn’t large) will put me out of breath. It has nothing to do with exercise or being lazy. It has to do with my heart not working correctly and my lungs being damaged. You see I have the exact opposite of COPD. I have restrictive lung disease. My lungs don’t expand so I get less oxygen in. I also have right sided heart failure with Peripartum Cardiomyopathy. When my husband gets a stomach bug and is sick for 2 days, I will get it and spend two weeks laying in the bathroom floor vomiting and having diarrhea. When my husband gets a cold for a few days, I will get the cold for a week or two AND get bronchitis or pneumonia on top of it. I will pull out as many spoons as I can…but I don’t have a limitless supply like a healthy person does. When I finally run out of spoons I end up in the hospital. I can’t run out of spoons and end up in the hospital…I have a four year old and a husband who rely on me. You can’t “get up one more time no matter what” when your physical heart says no. My husband fights for me all the time and comes up with spoons from I don’t know where. Please don’t think it doesn’t bother me. It bothers me greatly when people have to pick up my slack. Please don’t think I expect him to do so. I am very thankful when he does pick up the slack and help me out. But it doesn’t mean I can wave a magic wand and find extra spoons. Another problem you are missing is that some people may have the same disease and can fight and become champions because their disease process isn’t as severe as others. I know quite a few women who have PPCM like I do who work and raise families and run marathons…because their diagnosis was far less severe as mine.

  • Vicky Chiang

    Thank you Christine. You are really good! I translated your story into Chinese. I have lupus for 27 years since 17. I want to benefit Chinese speaking people. I’ve translated a book of Pollin’s “Taking Charge”.

    湯匙理論

    我和摯友共進晚餐,談天說地,不知不覺為時已晚;吃著薯條沾醬,彷彿過去在大學同窗的情景。和同齡的女生一樣,我們大部份都在聊男生、音樂和瑣事,似乎這是當時非常重要的事,我們嘻嘻哈哈,誰都不會當真。

    然後我一如往常,吞藥像吃糖果般輕鬆,她有點不自在的看著我,安靜片刻,她問了個問題: 「到底得紅斑狼瘡是什麼感覺? 」我有點驚愕,不是因為她無心的問題,而是我以為她知道一切有關紅斑狼瘡的事。她從我生病開始就陪我看醫生,她看到我用拐杖走路,也知道我在浴室吐得死去活來;她甚至看過我痛得流淚,難道她還不知道我的感覺嗎?

    我開始漫談著藥物、疼痛,但她繼續追問,似乎對我的回答不太滿意,我很驚訝大學多年同寢室的室友,竟然不瞭解我。她應該很清楚紅斑狼瘡的醫學定義是什麼。然後,她臉上出現一種病友們所熟悉的神色,就是那種健康人永遠不能明白的好奇。她問我得病感覺像什麼,不是身體上的,而是我心中對生病的感覺。

    我試著沉住氣,側頭環顧四周的桌椅,希望能找到靈感,或者至少有點時間思考,想想合適的字眼。我怎能回答一個我自己對自己都無法回答的問題? 我如何解釋我每天生活變化的細節? 我怎能清楚描述出生病的心情? 我原本可以放棄,像往常一樣打哈哈轉移話題,但是,我心想如果我不試著解釋,又怎能期待她理解? 如果我連最好的朋友都無法解釋,我又怎能讓其他人瞭解我的世界? 我至少必須嘗試。就在那一刻起,湯匙理論誕生了!

    我迅速地從桌上抓起湯匙,不好意思,我把其他桌上的湯匙也都搜過來,我注視著她的眼睛說: 「給你,假設你得了紅斑狼瘡。」她困惑地看著我,湯匙金屬碰撞的清脆響聲,從我手上到她手上,她莫名其妙地握著一把湯匙。

    我解釋著生病和健康最大的不同,就是做選擇。健康的時候,喜歡做什麼就做什麼,不需要想,也不需要做選擇,理所當然做任何事,奢侈的揮霍生命;而生病的人卻要不斷思考每天要做什麼選擇,在每件稀鬆平常的小事上都要持續思考,我要做甚麼選擇。

    健康的人每早晨打開眼睛,就擁有無限的可能性,他們擁有精力做任何想做的事,特別是年輕人,完全不需要擔心每個行動後會帶來什麼後果。為了加強解釋,我用湯匙來說明我的意思。我要讓她手裏握著東西,然後再從她手中抽走,因為生病就好像曾經擁有的一部分失去了。如果我從她手中拿走湯匙,她就會明白,失去某人或某事,在這裏是失去健康的紅斑狼瘡患者,是什麼感覺。

    她很興奮的抓著湯匙,不曉得我在做什麼,但她總信得過我。我猜她大概以為我像往常一樣要跟她開玩笑,尤其涉及這種敏感問題。她不知道這次我是認真的。我要求她數數手中的湯匙,她問為什麼,我向她解釋,一個健康的人,你擁有的是無限的湯匙量,但是當你生病了,你要計畫妳的一天,就得先算算你有幾支湯匙。這不一定能保證什麼,但至少這幫助妳開始新的一天。

    她數了手中有12支湯匙,笑著說要更多,我說不行,我知道這遊戲奏效了,她看起來有點沮喪,我們還沒開始玩呢! 多年來我想要更多湯匙都不能得,她怎麼可以! 我告訴她要保持警覺,知道手中剩下多少湯匙,不要掉了,因為她永遠不能忘記她有紅斑狼瘡。

    我要她列出她整天的工作量,包括最簡單的事,譬如她忽略的日常家務,或只是休閒好玩的事,我告訴她,每一件事都要花一支湯匙。當她提到早上一開始就準備上班,我打斷她拿走她手上的湯匙,我說:「不行,你還沒有起床,你要先打開眼睛,發現自己晚起了,因為昨夜你沒睡好。你得先爬下床,為自己做點東西吃,因為你若不吃早餐,就不能服藥,如果你不服藥,就要把今天和明天的湯匙交出來。

    我很快地再拿走一隻湯匙,她發現自己還沒穿衣服,沐浴要花一根湯匙,只是洗洗頭髮、刮刮腿毛,早晨要舉高又彎腰的,可能不只花一隻湯匙,但我不想太為難她,把她嚇壞。穿衣服又花掉一隻湯匙,我讓她把每一個動作分解,想想細節,生病時不是只把衣服套上而已,我要找哪件衣服適合我身體狀況的,如果我的手痛,有扣子的衣服就很困難,如果我當天有瘀傷,我得穿長袖,我果我發燒,就得穿件毛衣保暖,如果我在掉頭髮,我需要更多時間處理,然後還要加上五分鐘心情鬱悶,因為總共花了兩個小時完成這些動作。

    我想她開始明白實際的狀況,還沒有上班之前,她已經用掉了六根湯匙。然後我向她解釋,接下來的時間你得聰明的做選擇,因為湯匙用完了就是完了,有時候你想借用明天的湯匙,但是想想明天會有更少的湯匙可用。還有,生病的人總是要未雨綢繆,考慮到明天可能會感冒、感染、或碰到一些危險的事,所以你不可以讓湯匙存量過少, 因為你得預備好,你不知道到那時候你才真正需要湯匙。我不想讓她太過沮喪,但是我得很實際地讓她知道為最壞的情況做準備。

    我們繼續這一天的行程,她慢慢學到,跳過午餐得花一隻湯匙,站著等車也得花一根湯匙,甚至打電腦過久也是。她被迫得做選擇,好好想清楚,如果她要吃晚餐,她就得選擇不出去辦事。這假設的一天已將近尾聲,她說她餓了,這時她手中只剩下一隻湯匙,如果她選擇做菜,就沒有湯匙去洗碗,如果她出去外食,就沒有體力安全地開車回家,然後我告訴她,很可能她噁心沒胃口,根本無法做菜,她決定煮湯,簡單得多,但是這時大約七點鐘,晚上接下來的時間,如果你想要輕鬆玩玩、上網、打掃衛生、簡單做做家務,很抱歉,已經沒有湯匙了。

    我看見她開始沮喪了,我一點也不想讓她難過,但是我很高興她開始懂我一點點了,她熱淚盈眶,輕聲問我: 「克莉絲汀,妳是怎麼辦到的?
    妳每天都這樣嗎? 」

    我說: 「有些時候比較好,有時比這還糟,有時候我有較多湯匙。但是我永遠不能讓它離開我,我也不能忘記它,我總要想著它。」這時,我從口袋中拿出預藏的湯匙,說:
    「我學到一個功課,總是在口袋裏保留一隻湯匙備用,準備不時之用。」

    這是我所學到最難的功課,就是慢下來,不要做所有的事。我已經奮戰到今天。

    我不喜歡孤獨,我討厭一個人留在家裏,不能做我想做的事。她感受到我的挫折感,一般人看似稀鬆平常的事,對我而言卻有如步步艱難。我得想到天氣、我當天的體溫,整天的計畫。別人只要去做事就好,我卻要像打仗一樣準備好作戰計畫。

    這種生活方式就是健康和生病的不同,我沒有「想做就去做」的自由,這是最棒的能力,我無法不計算我的 “湯匙”。我們越聊越深,我感到她很難過,也許她終於瞭解了,也許她瞭解到她永遠不能真正誠實的說她了解我。但是至少她不再抱怨我有時不能和她出來吃晚餐,我不能到她家,她老是要接我。

    離開餐館前我給她一個擁抱,握著一隻湯匙,我說,「別擔心,其實這是個祝福,因為這樣,迫使我不得不思考每一件想做的事,你知道一般人浪
    費多少湯匙? 我沒精力浪費時間、或是浪費 “湯匙”,你看,我選擇花時間和你在一起。」

    從那次以後,我都用湯匙理論向人解釋我的生活,事實上,我的家人和朋友也常提到湯匙,這成了我不能做事的代碼。一旦人們瞭解湯匙理論,不只比較瞭解我,也會多少改變他們的生活方式。我想,這不只有助於瞭解狼瘡,也有助於其他慢性病或殘障人士,甚至幫助一般健康的人,讓他們不再視健康為理所當然。

    所以,我做任何事時,等於把我自己給出去,我後來名聲大噪,因為我都都這樣和朋友開玩笑: 「你看你有多特別,因為你擁有我的 “湯匙”。」

  • Lisa

    I am young. In fact, when I became sick I was a very new mother and (for all intents and purposes) I was still a newly wed. We had no clue I would get so sick from having a child. Everyone assumed I was just lazy. I was using being a new mom as an excuse to not have to work anymore. I didn’t need to worry about getting all dressed up, fixing my hair and make up and working hard because now I was married. Sadly enough…people really did think this. For the longest time my husband even thought this. I tried to carry on the way I had before (I still didn’t have a diagnosis). By the time I drove to work in the morning I had used all my “spoons” for the day. It became a horrible life. My co-workers were tired of dealing with me because I was too tired and too sick to work. Just like the story I would be too exhausted to go to work the next day. (I was an RN.) I would typically work one day, come home and pass out on the couch, sleep until my husband woke me up for dinner, eat, go to bed, sleep all night (my husband had to get up with our daughter at night because I was so exhausted I didn’t wake up when she cried). The next day I would call in sick because I couldn’t physically get out of bed. At 28 years old I was diagnosed with heart failure and restrictive lung disease. (It took so long to get a diagnosis and treatment for the heart failure that the fluid in my lungs caused lung damage.) My job let me go after I was put on oxygen since I couldn’t fulfill my obligation as an RN. My daughter is now 4 and I stay home with her. (I am still fighting for disability.) Some days are better than others, but those days I typically pay for it the next day. We hang out at the house most of the time and I make sure we never miss nap time. Some days we clean, some days we do laundry, some days we cook…never on the same day though. Some days my daughter will take a 1 hr nap and I will take a 2 hour nap on the couch. She now understands better than most adults that some days Mommy just can’t do it. She knows that most days lunch time is just time to eat healthy snacks. (I always keep string cheese, cut up veggies, fruit, peanut butter, etc available for her to eat so I don’t have to cook if I’m not feeling well.) My husband has finally accepted that I am sick but it annoys him because I get colds, viruses, etc so much. (I get bronchitis 6-9 times per year along with other colds/viruses.) I think what upsets him the most is he can get the stomach virus and be better in two days where I will get it and be sick for 2 weeks and be on the verge of being hospitalized. I know I will never be the RN I was before. I know that I won’t get to be the mom I always dreamed of being. I know I’ll never get to be the wife I planned on being. But I’m ok with that. I have accepted my situation. I may not be the mom I wanted to be…but I am a mom! I get to be with an amazing little girl who brings joy to everyone who meets her. I may not be the wife my husband married 5 years ago, but I am still a very lucky woman for getting to spend my life with such an amazing man who loves me regardless. The difference is…I can’t be out in hot or cold temperatures, I can’t do anything overly exhausting, and I have to take naps…sometimes one a day and sometimes more. I just have to be careful to count my spoons.

  • John Seneshel

    Amy, Buy a poster, when it arrives, frame it, hang in your office. Hang it next to your degrees. Information about the poster is: below the article and above the comments.

  • Loretta

    Greg.. when I say that and they say the same thing… I look at them and imagine punching them 😉 But, I just say… “No you don’t, not with the pain I have” And, that usually changes the subject.

  • Moe

    It’s different though. My disease did not make itself known until I was in my mid-30’s. For those of us with illness that affects our minds, muscles, bones, nerves, etc. it is similar to your loved one with diabetes (my husband is a diabetic) if his life depended on him going without food for a time, he possibly could push himself through it. Then when he eats and is given a couple of hours it’s like it never happened. Healthy people who push themselves through say an extremely difficult move where you move all your belongings all by yourself can recoup after a day of rest. Most of us whose illness is still “invisible” meaning we get out into the public and are not bedridden or even in a wheelchair 24/7 could not do a move by ourselves, we can’t do it even if our lives depended on it. We could help one or two others do the task, I helped my husband and brother move us recently. I didn’t lift heavy things. I was in bed, with a flare, unable to participate in life for 5 days afterward. It’s just so different now. Before my disease surfaced, I was able to kick it in high gear and get it done even when I was sick with the flu or just off a 12 hour shift at the hospital. Just push through and I’ll rest soon. But now, there is no high gear, there are no extra spoons to find. I appreciate you fighting and supporting your diabetic friend but I’m not sure the spoon theory fits diabetics as much as other autoimmune diseases.

  • Greg Wotton

    Laying in bed at 4pm (Oh, don’t people say “I’d love to be able to lay in bed at 4pm”) I read this article. My pain hasn’t really been in control for a few weeks now and I’ve been feeling really, badly, drained. I had tears in my eyes by the midpoint. What I like about this is the visceral nature of the experiment. I’ve tried to explain using levels, numbers, etc. (Aspie on top of everything), but the visceral nature of giving someone something tangible to hold is valuable to understanding.

    I’m tempted to mention this theory and promote the site, in a book I’m working on which is about how to deal with surviving serious illness and injury. People seem to think that you can “get better” and go back to being who you used to be. I have a systemic, degenerative bone disease. Both shoulders were replaced over a decade ago and we carefully watch the lesions in other joints to see which will collapse next. My first wife kept expecting me to “get better” to be the highly active and energetic person she met in the first place. I’m hoping a book will be a gift people can give each other in the same way as When Bad Things Happen to Good People has been.

    I’d be interested in discussing this with you at some point if you’re at all interested in being included, even if you’re only willing to let me put a URL in “additional resources.”

    Thank you for sharing this insight. It benefits us all.

  • Amy

    How do I get permission from the author to print this article to give this to my patients. I have a support group of women’s with severe pelvic pain, and they could benefit from reading this article. If any one knows how to get permission from the author can you please e-mail me at [email protected]. Thank you!

  • UnrulyGuest

    We are a community of people who don’t appreciate it when anyone tells those who stand for us to get a life. Sorry for your loss but I stand and fight with the people who get on my coaster willingly.

  • BeautifullyChaotic

    You make some valid points between all the anger and insults. Jumping on the roller coaster is not the same as owning it. I think the point was that we are all fighters whether sick or healthy. Nobody wants to fight with someone who has already counted themselves out. I would never speak to someone who is there for me like you have just done. I didn’t get to choose what I live with but those who love me stand with me voluntarily every day. It sounds like you are fortunate enough to have a family of fighters. Nobody here would belittle those five days you stayed up. Saying up for that long seems nearly impossible but I think it makes the point that you had to keep coming up with spoons to be there. You did what even most healthy people can’t do for somebody like me. I would never tell you to get a life or claim you are not in the same boat as me. Just the way you found more spoons to go on for five days maybe I can too. You both sound tired from the fight but your anger would keep me far from your corner. I am sick but I am strong. I will stop counting my spoons on the ground and stand with those who love me. Thank you

  • Guest

    This has really helped me understand how difficult it is for others to deal with a chronic disease. A good friend has CF and I have always admired her for spending so much time in hospital/doing meds – yet still having gathering enough mental/ physical strength to achieve all the things unaffected people too; this helps me check myself and realise that it’s harder than I can ever imagine – but being there for them and lending some of our ‘spoons’ even if it seems small is the least we can do. 🙂

  • oncomom

    I am disgusted by your nasty response and martyrdom. I had a very ill daughter, actually she died. I took care of her every day and night of her life including cancer treatment and hospice care. Your diabetic person is very sick and im sure they appreciate your help but to actually put yourself in the same boat or lower of people who have serious life threatening conditions is disgraceful. Poor you you are healthy enough to find more spoons. Boo hoo I stayed up for five days straight while my daughter was a champion. You are a stupid cunt. Get a life. Caretakers are not the same as the fighters. You dont have to fight, you choose to assist. Jumping on the roller coaster is not the same as owning it. Im appalled. Ill beat you upside the head with my spoons. Cry about it. From an onco mom of a dead 10 year old and a caregiver of my mom grandmother and mother of an autistic son. Wow. Just wow,

  • Guest

    I read this article over many times. I understand, I really do. I came here looking for a deeper look into how loved ones with these types of problems feel because I know that I can never really know. I guess my problem is that I know that everybody has spoons. Maybe because of your problems you wake up with twelve but even a healthy person can wake up with next to no spoons many days. A healthy person has no excuse so they are forced to keep finding spoons in their pockets. Many people with these types of problems are held up by healthy people. I don’t get the luxury of counting my spoons or planning where to put them. I am expected to have a limitless supply because all that stuff that you can’t do I must now make up for. Even if I don’t have enough spoons to carry you I still do. Even if I can barely stay awake I stand for you. I stand so you don’t have to because you call me healthy. I understand you are an injured fighter and I am in good shape but I am not given the choice to stay down as you are. I have to stand in front of you while you recover and take the hits. If I go down and don’t get up then we are beaten. I understand that you are weak and tired but stop counting your spoons and just stand up. Stop being your own worst enemy and stand with me. Please do not show this to somebody who stands while you are defeated. We know you are injured but please don’t have the guts to tell us that if you get knocked down 6 times you are done before the fight has even started. If somebody told me that, somebody that I loved, I would look at them knowing they already beat themselves. Then I turn to life duck my chin and keep getting up. Its not that I didn’t count my spoons because they aren’t there, I didn’t count them because I always have to find one more for both of us. I will always be there to help you up but you have to be willing to keep getting up. I won’t show you my spoons and please don’t show me yours. I love a Diabetic with everything I have. I suffer when she suffers. We win every time we find a spoon that nobody thought was there. The difference between a winner and a loser is a winner gets up one more time no matter what. Sick or healthy don’t try to hand me your spoon from the ground while i’m fighting for you. My thanks and love to all of the disabled that don’t let it leave them on the ground counting spoons. If you are offended by my thoughts tell it to those in your life fighting for you and those who share your illness yet still become champions.

  • JustAThought

    I read this article over many times. I understand, I really do. I came here looking for a deeper look into how loved ones with these types of problems feel because I know that I can never really know. I guess my problem is that I know that everybody has spoons. Maybe because of your problems you wake up with twelve but even a healthy person can wake up with next to no spoons many days. A healthy person has no excuse so they are forced to keep finding spoons in their pockets. Many people with these types of problems are held up by healthy people. I don’t get the luxury of counting my spoons or planning where to put them. I am expected to have a limitless supply because all that stuff that you can’t do I must now make up for. Even if I don’t have enough spoons to carry you I still do. Even if I can barely stay awake I stand for you. I stand so you don’t have to because you call me healthy. I understand you are an injured fighter and I am in good shape but I am not given the choice to stay down as you are. I have to stand in front of you while you recover and take the hits. If I go down and don’t get up then we are beaten. I understand that you are weak and tired but stop counting your spoons and just stand up. Stop being your own worst enemy and stand with me. Please do not show this to somebody who stands while you are defeated. We know you are injured but please don’t have the guts to tell us that if you get knocked down 6 times you are done before the fight has even started. If somebody told me that, somebody that I loved, I would look at them knowing they already beat themselves. Then I turn to life duck my chin and keep getting up. Its not that I didn’t count my spoons because they aren’t there, I didn’t count them because I always have to find one more for both of us. I will always be there to help you up but you have to be willing to keep getting up. I won’t show you my spoons and please don’t show me yours. I love a Diabetic with everything I have. I suffer when she suffers. We win every time we find a spoon that nobody thought was there. The difference between a winner and a loser is a winner gets up one more time no matter what. Sick or healthy don’t try to hand me your spoon from the ground while i’m fighting for you. My thanks and love to all of the disabled that don’t let it leave them on the ground counting spoons. If you are offended by my thoughts tell it to those in your life fighting for you and those who share your illness yet still become champions.

  • great-granny

    There are so many people around you that have invisible illnesses that struggle to just get thru their day. Learn to have patience and consideration for others. The general public can be so discourteous and sometimes even mean when they don’t stop and really see that person that is too slow or looks funny and give a little prayer of thanks that they don’t suffer like so many others.
    I have suffered with several of theses diseases since the early 70’s, at first I had many spoons but as the years pass I need more spoons every day. Thank GOD he gives me the courage to follow the leads allowed by the disease, some days it means I do nothing, sitting up, turning over in the bed, standing/walking, eating what my husband of 47 years fixes me, takes all my spoons.
    GOD walks with us and we must rely on HIM for out strength.

  • So in love with this theory! My husband has PTSD, and he said it was spot on. Thank you and best of luck!

  • Thankyou..I honestly would buy the written version or the poster and put it in my living rm and I dnt wnt 2 copy paste n print and infringe,but if u ever mke new ones and have one odd one or a torn one I’m ure gurl.xoxo

  • Cynthia Champlin Rand

    Great analogy using spoons as units of energy. This will help me . I also have lupus – as well as Sjögren’s, Fibromyalgia, chronic migraines, hypothyroidism, depression, & allergies. I also find that mental energy is a big issue too, and once I run out for the day, I can’t deal with another thing.

  • MJ

    I do too — just wanted to reach out & say you’re not alone.
    I am so in love with this piece I think I’m going to print it out and carry it around with me.

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    And technicians and specialists in this field and they Adaut and using unauthorized equipment
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    Entertain the process of sewage and we specialize in this area where we are doing this job
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    Which ensures service efficiently solving effectiveness and fast to all the problems and we are working on
    All customers’ different requirements, which ensures the best results at the end of the process. شركة تنظيف بيارات بالرياض Basma Riyadh company offers you Dear Customer optimal solution for suction process we orchards
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    And equipment necessary to complete the process of suction shafts as best as possible. شركة شفط بيارات بالرياض شركة كشف تسربات Company Basma Riyadh provide you Dear Customer optimal solution to detect leaks occupies
    Basma Riyadh company ranked first between companies detect water leaks in Riyadh
    We offer this service on a high level of professionalism, which guarantees you the results at the highest
    Accuracy and efficiency there is no need anymore to worry about leaks nagging problem we have all
    Ways and means that will make us help you detect water leaks in your home. شركة كشف تسربات بالرياض Comes the problem of leaks as a result of damage to some parts, which leads to water leaks
    About 1 liter every hour and this means that the amount of water leaked in a year if it is not
    Leak detection and treatment be enough to fill a swimming pool. كشف تسربات المياه بالرياض

  • H. A.

    Let me say that this was an excellent way of elucidating the reality of living with a long-standing illness/condition – probably one of the best that I’ve seen. It’s very simple, yet because of its simplicity it hits home harder. I showed this to my brother (who has Type I diabetes) and he pretty much agreed with everything this article stated. Excellent concept – I had to share, just to see if it’d help spread some understanding, somehow.

  • kim

    how sad and frightening for you, Heidi. May God bless and guide you and your family. kim

  • LizzyB

    I have a young teenage grandson with an invisible illness. When you tell people what he has they look at you like you are crazy. He has to pick his “spoons” very carefully. There are days when he wakes up without any spoons and will have work at obtaining spoons for the next day. My prayers to all how have these illnesses.

  • Laura J. Davis

    Yep. That about sums up my life. I used up half my spoons this morning because I wanted to shower. Being sick with an incurable disease sucks, but like the author says you have to count your spoons and learn to live with an extra spoon in your pocket.

  • LizzyB

    It had me in tears. I have a grandson with an iv

  • Heidi Merriman

    This touched me deeply, as I have an extremely rare disease no one including Dr.’s have heard much about. So they don’t even know my symptoms, I have to tell them. It was also exactly what I go through,literally. I was diagnosed terminally ill.given 3-6 mnths 2 live,I’m 42 have 4 kids and no family, no help,gd friends that don’t understand. I have lived 2 years past my expiration date, but every day is so hard, will this be my last day? It’s I imagine it is similiar to having someone you care about missing, there is no closure until they come home or they find the body. But, I havent walked in those shoes. Thankyou for this.xoxo. Someone Else really knows how I feel, I was so alone!

  • Jacqui

    Thank you so much. It’s made me laugh and cry but it’s a fantastic way to tell people i don’t know how u thought of it. But thank you it means so much for you to share it with us.

  • Brenda

    Thank you for this. I have had MS for 18 years and now I finally have a way to explain my days to others.

  • Debbie

    Thank you so much for this. My daughter and I have Hashimoto’s thyroiditis and at least we have each other for support. I have had hypothyroidism for 18 years and she was diagnosed with Hasimoto’s 3 years ago. I was later tested and yes, Hasimoto’s disease for me too. Your letter explains exactly what we both go thru and yet people look at us and think we look ok and should be able to do anything. It is really maddening when trying to do the simple things in life like cooking dinner, oops can take away my last spoon or I will pay for it later. Love this so much.

  • Elizabeth

    I have panic disorder, for 30 years now, i developed fibromyalgia 20 years ago, i’ve suffered a long long time and i have often said you have to be bleeding from your eyes for anybody to believe the pain that i endure and understand why i can’t do everything anymore. For those reasons I was happy to read this because i felt less alone in the every day choices i have to make. thank you for this post. I won’t try anymore to get through to my friends n family, but i know there are others out there that understand all of this.

  • UJ

    Cannot have explained better…I am using your spoon theory from now onwards….Hopefully my dear ones will understand better

  • mohammed elgammal

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  • mohammed elgammal

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  • Sunshine

    I suffer from Chronic Treatment Resistant Migraines….thank you so much for this article, it is such a great tool for helping others understand

  • Kay

    Thank You for writing this a coming up,with this way of putting Lupus…..Maybe this will help my family & friends to understand more of what I’m going thru everyday…….Thank you……I was gonna share on Facebook for more to be able to read this and understand what others go thru but then I saw where you said not to copy,so I want.I plan to order a poster just as soon as I can get the money to do so with.Thank you so very much again…..and hope that you are having a great day

  • Guest

    Stop selling bullshit to people who are looking for hope. What you do is cruel.

  • Alisa

    It’s the same way for Lyme Disease.

  • Cheryl

    This story is such a gift! Now my friends and family can understand what I am walking through each and every day. Thank you!

  • mohammed elgammal

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  • mohammed elgammal

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  • Rozie

    why be so nasty?

  • And the question is.. how does a troll get internet under his bridge?