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.

You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

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  • Lucas Schofield

    I am so happy that the spoon theory exists. I am crying right now because there is finally a way for me to tell people what I am dealing with on a daily basis. I am 26 and I have type 1 diabetes and I have been diagnosed with ADHD, depression, and body dysmorphia. It is a daily struggle for me to even get out of bed and face my day. I have battled with ideas of suicide since I was 12 because people didn’t think I was sick because other than my diabetes everything else was unseen to them. When I didn’t get homework done or I just sat quietly when people needed me to talk or answer something I was deemed lazy or stupid and hearing that has taken a severe toll on how I see myself because I couldn’t explain to people that I am unable to talk to you or do anything else today because I have nothing left inside me. As I got older and people started to understand what I was dealing with or at least could put a name to it things got worse. They knew I had ADHD and that I was diagnosed with depression and body dysmorphia but they always looked at me like the article said with a curiosity that meant they didn’t understand. When I tried to tell people they would usually say “so you’re having a bad day? cheer up then” or “you need to think about what you say instead of hiding behind some fake illness (in reference to ADHD)” or the best was “Why do you think that your body is ok, just exercise more and you’ll feel better”. It also didn’t help that due to a lack of understanding many of my romantic relationships only made me feel worse instead of better because I was never right for them either because of my body or my mind they always used my illnesses as a way to judge me. This article needs to be made available to every person so that finally those who take their spoons for granted will understand that we will never have that luxury. To everyone else who has commented on this article I hope you can make the best of your spoons.

  • Will pray for you

  • Thaao Hanshew

    This is a great article. I have severe anxiety and depression and it’s really hard to explain to people that you only have so much mental energy to allocate to whatever and when it’s gone, it’s gone. You can lose spoons by things outside of your control. Had to talk to a stranger when you weren’t expecting to? See something online or overhear something that triggers you? Accidentally remember something from the past you worried about (even though there’s no reason to worry about it now)? Zone out while driving and then notice it and scare yourself? Dropping spoons. Of course, it’s the same as Lupus but I love how relateable and understandable the spoon analogy is. I think it would make it a lot easier to explain a wide variety of chronic illnesses both mental and physical that drain on people’s everyday lives. People think you just live a normal life like a well person, but sometimes take a pill. Maybe sometimes there’s a struggle like some pain or something, but otherwise you’re “normal.” They don’t realize how different life really is, and I think this can really help to explain that.

  • Alex Ingram

    It seems one needs a lot of spoons to handle all the crap that life dishes out. I belong to the club. (Short list) 3 herniated disc’s and 2 spinal surgeries, OA in hands, elbows,shoulders, back/hips/knees/feet. MVP with dis-autonomia, IBS (Ice burg shit), Insulin dependent Diabetic, Social Anxiety, depression, PTSD, Adult ADD, some OCD, hearing loss, night terrors, prolapsed tri-cuspid valve. It took a lot heaped up to finally disable me after 34years of work. OK so I am now a domestic Adonis who tries to cook/clean. The last 2 months I’ve been looking after my Mom-in-law who has Alzheimer’s so bad she doesn’t know who her daughter is, where she is, or what happened 5 minutes ago. A few years ago I worked while being in non stop pain (maybe 10 minutes a day without stabbing pain somewhere.) for 7 months straight. At that point I got really depressed and started to lose HOPE. (Yes I had random thoughts of death as a release from it all.) My Doctor was writing off label Benzodiazaprenes (Kilonapin)for me for over 10 years. I got rid of that Doctor and weaned myself off the physical addiction. I’ve been Benzo free for almost 2 years. Society wants to deny me access to pain medications. (OK so there IS a real problem with “Lortab Loonies” in the world.) I’ve gone on two 6 day self imposed “no pain med” trials. (Thank God I’m not narcotic addicted) I used Turmeric and other non-prescription pain relief methods. Both times I was reduced to a cripple who is in agony. Good days/bad days,,,,good Doctors, and Proctoligists. At age 60 I’ve almost reached the point of not caring what I look like to other people. In a few more years I’ll be so blind I won’t care what they look like. (Seems fair enough.) Every day (even with pain) is another blessing. Humanity needs pain to understand what evil really is.

  • migdalia

    I would like ur permission to post this on Facebook I have many friends who have illnesses n so do I maybe the critical could finally understand

  • Renee

    I have Hashimoto’s Encephalopyathy… it’s a rare disease. I get seizures, paralysis, extreme fatigue, shortness of breath, chest pains, extreme cold sensitive that can put me in a seizure or radically rob my energy, gluten intollerent, caffeine intollerent that can bring on a seizure, sugar intollerant that can radically rob my energy and throw me into a seizure, and more… It’s been a battle, but I’ve learned how to cope and redesign my life to work for me. I had been seizure free and free from all other difficulties related to this disease when I radically changed my diet and turned to a strict RAW FOOD diet. Thus I started my facebook page… Empowering Your Body For Life. Check it out. And if you have any questions on how to cope with this insidious illness send me a message I would be happy to help. P.S. eating raw foods WILL restore your energy level because your cellular function needs all the purity of food it can get to keep you alive and well. Cooked and processed foods will not bring your energy level up, only RAW FOODS. Working on my book… stay posted.

  • Helena

    How many times has you don’t look sick been said ,I read this story and cried I have tried many times to explain how I feel.Not only having lupus but also cauda equina from an accident.Thank you for writing this ,I have already counted the spoons in the draw

  • Jenny

    I cried by the end of this article tears were welling up and I bawled. I had a back injury which lead to chronic pain, then Fibromyalgia and CFS. Your words rang the truest of my struggle. I have never ever been able to draw the picture for my friends, family, colleagues or acquaintences who say “why are you so tired” or “have an energy drink”.

    Now I know why chronic pain/illness people are referring to when they say “spoonie”! Thank you for writing this and for being so creative.

  • Ed

    This is fantastic, it explains everything so well. Maybe it could also include the number of spoons one may have to use suddenly to deal with a totally devastating period of pain that has never before been experienced. One that requires a spoon or two which needs to be set aside. I explain my sudden stabs of pain as akin to an earthquake, can never be predicted and when it strikes, you are always waiting for the next one that may or may not come. We are strong warriors for what we are going through, never mind, there are days when I don’t think I can or want make it. . Thanks again.

  • Allen Lee

    Even “healthy” people have problems and must make choices, dear. Not to worry, though, Jehovah God has the REAL solution to ALL our problems, and the benefits will go on FOREVER. How’s THAT for a remedy?. . .

  • Allen Lee

    Then why do you think they’re “friends”? Because a REAL friend will stay with you NO-MATTER-WHAT, even an “invisible” disability like hearing loss. Add in age, osteoarthritis, lumbar scoliosis, osteoporosis and 2 bad knees — Well, U get the picture, I’m sure. But like me, you just KEEP ON KEEPIN ON!!! Yes?

  • Zzelly

    Thank you… You so accurately described a multitude of ‘hidden’ things, I have PTSD and an ‘alphabet soup’ behind that… I cried reading this because you wrote the most accurate and understandable thing, I may not have Lupus, but am with you every spoon along the way

  • Blow drying is not really all that good for your hair anyway!

  • Somebody recently said to me, “You haven’t blow dried your hair in over a year. What’s up wiht that?” I replied, “I have not been able to hold my arms up over my head for longer than a few seconds in over a year.” *stare*

  • I do not have Lupus, but chronic severe PTSD and the array of fun that comes with that every day…. startling, sensitivity to noise, light, touch, hypervigilance, chronic pain, depression, anxiety, insomnia, ibs, eating disorders, substance abuse, etc etc. I’ve battled it for years without treatment until last year when I ended up in a psychiatric hospital due to a breakdown. This spoon theory very accurately portrays one’s mental energy also. As I have so many physical issues related to my trauma. My treatment and recovery plan has basically been to learn how to ration my spoons! I have only X amount of “functional energy” in me to be reasonably functional. I require tons of down time, and dissociative activities like art, netflix binges etc. My body and brain will literally check out when I’ve had too much. I generally end up hysterical then. Thank you so much for the brilliant analogy! It is very helpful!

  • Jennifer Pellinen

    I was recent given a link to this page. The spoon theory is a great concept. I am autistic and I realized that for ages I have been pretty bad at spoon management. I sent my therapist a link to this page as well as the wikipedia article on spoon theory. Now we will have a good theoretical framework to deal with my spoon management issues. Thanks.

  • Safety Officer

    Thank you for putting it so well. Just a few days ago I was trying to explain to a friend why I have to plan my day and week out well ahead so that I don’t over-do it any one day because there is always a bill to pay for that in the end. I couldn’t find a good metaphor for it at the time, but this will do fine!

  • Isabella Andersen

    Hey guys, I’m an aspiring spoonie vlogger. I’m hoping to get spoonies together so we can share information and a sense of camaraderie. Please check out my channel! https://www.youtube.com/watch?v=sPFhZjUQeno

  • Lucy

    I can so relate to you! Some people just don’t get that being depressed just because you’re low on money, going through a breakup, or such is NOTHING like clinical depression. One of my best and closest friends works in the medical field and one day she called to chat and it was on one of my “really bad” days. I had been locked up in my home for days, crying my eyes out, and I THOUGHT I could truly talk to her. When I mentioned that I was having bad suicidal thoughts, she immediately got so mean, hateful and told me I was the most selfish person she had ever met!!! I was floored! Not only was this a friend I had shared everything with, but she was also a friend whom I had sat and listened to as she cried and poured her “depressed” heart out to me over multiple breakups and she also worked in the medical field at a place that actually dealt with a lot of clinical depression!!! I also have medical conditions along with the mental ones. I’ve had multiple back surgeries due to an accident I had as a toddler, I’ve been diagnosed with anxiety/panic disorder, Recently, I found out I have a thyroid disorder and we are still trying to figure out the best treatment that will work for that. I was diagnosed with melanoma and have been cancer free for a year now, however, we’ve found more places that are going to be biopsied. Yet, I TRY to get up, put on make up, fix up, dress up and I try to not show that anything is wrong. I’ve had a woman to tell me that I could not possibly have back pain because I wear high heels…….I’ve always loved heels, I’ve always tried to look my best, and this woman has a 24 yr old daughter who is every bit of 100 plus pounds overweight, yet she had to have a minor back surgery. All I could think of is what her mother had said about my back pain and my heels and I truly wanted to tell this woman that if it was that easy, then her daughter must not have back pain, or else she would shed 100 pounds. It’s so easy to look in someone else’s window and see what “we” would fix, yet, “we” can’t seem to see what needs to be fixed in our own windows. Thank you so much for sharing your story, I wish you well, I hope they will one day take the illnesses we can’t see, as seriously as they take the ones we can see and will fight harder to find a cure or more coping mechanisms. Until then, keep hanging tough. God Bless!

  • Rebecca Hefner McMahan

    Google Izabella Wentz….She has a great program and book addressing the root causes of Hashimotos….She developed it at a very young age also. She has spent many years just researching Hashimotos and has collected all the info…. in a book, The Root Cause and is now conducting a 12 week advisory program to help guide a person in healing. Also has a dietary program with recipes and a support group. Very helpful…She is understanding and compassionate…doesn’t want folks to have to go through what she did.

  • I am so grateful~I have my husband, he is every spoon I need for each day. Without him those spoons would be used up before lunch. I had read your Spoon Theory many times over through the last 3 years, but to be honest as much as I have all these difficulties due to RA, OP and numerous other forms of Arthritis, I really did not get it. And no I am not newly diagnosed, I was diagnosed at age 2 with JRA~I am now 54.. Have had all hips, knees, shoulders replaced plus, plus, plus. Today I read your theory again with an open mind, and got it. I can’t just pop in to visit my sisters~she has stairs, and I can’t join the girlfriends for a weekend getaway, and i can not join my family at the lake~when my husband is working. Hell I can’t even go for a physical without my husband helping me get changed at the doctors office. Clothes and shoes well that’s a whole other story. When my husband helps me I can wear anything but if the weather changes, and he’s off to work~oh no!!I And my hair~yikes I don’t even want to go there. After reading this today, I thought of my life in the past and the days when my hubby is not around all day, and yes, reality is, those spoons would go way too fast. Sad as it is, I don’t dwell on what I can’t do, I dwell on what I can. My days are my days and I do plan accordingly. I am healthy otherwise and I can drive and I can walk. Thank goodness for my husband and my friends and my family because they know me well enough to hand me that extra spoon when I need it.

  • Tammy Tocci

    I thank you for sharing your story of the spoons! I will try your description of your life of spoons in the hopes that it will explain my painful life so at least a few people might leave me alone in peace! I have several health conditions that cause me to have constant pain daily! Sometimes severe pain and end up in the ER or hospital. I now see a pain management doctor and feel blessed to finally have some one who understands and cares. Before finding this doctor, I had lost my desire to live as I had no quality of life anymore. No one seemed to understand including most doctors, family and friends.I too get the comments. Saying, that I should just push through it, I don’t look sick or in pain. I’m exaggerating it can’t be that bad. Taking pain meds daily gave me a quality of life again. But that has brought more and new comments. Maybe all those pills you take make you an addict, maybe causes more pain. They are the cause of my depression and anxiety, if I would just stop taking them the side effects would go away. I’m just a drug seeker, I really just want to get high. My Dr. shouldn’t give these to me as there are other ways to deal with the pain. The judgements, stares, lack of trust has extremely hurt my feelings and at times enrages me! I’ve done everything I can to be in compliance with the laws, doctors and pharmacists to no avail. I can’t defend myself too much as its taken as proof I’m a drug addict! Because so many IDIOTS have taken these drugs recreationaly to get high, stolen, faked illness, going to the ER lying they are in pain, I’m harassed and looked down upon constantly! I’m so tired of it! Even family and friends continue to question me ! I DO NOT ENJOY TAKING THEM, NOR DO I WANT TO TAKE THEM EVERYDAY! But I deserve to have a pain free life, one that is enjoyable and the ability to participate in fun activities! ! I would do ANYTHING to not have these health issues and not be harassed and questioned constantly! ! I’ve prayed for healing, I prayed for a cure. Anything that would take me out of the hell that’s my life! This is why I hold on desperately to those few people who believe and understand me and my reasons for continuing to take the meds and fear of them being taken away because people don’t belive or understand. I don’t care I’m addicted for the rest of my life as long as I have a quality life to enjoy and live for the rest of my days on this earth! Thank you again for sharing your story. It has helped me feel better and probably have given more people hope!

  • Rebecca

    This is an amazing explanation of life with a TBI (Traumatic Brain injury)! Thank you for your personal story of how you live each day, now I can explain my life to others using your example. God bless you!

  • Amelia Vincent

    Just when I finally had some life to myself, my body started falling apart quickly. I was tested for lupus, but only have fibromyalgia and osteoarthritis. Those, and a bunch of other minor and major things add up to 100% disabled and counting my spoons.

  • Kathy McConnell

    Thank you! I have Mass Cell Disease. I was so strong, healthy and athletic when I got sick I kept using all my spoons even on my bad days. At first they were all bad but once I got on the proper med protocol, I would only have maybe 2 out of 10 bad days. I would push myself even those days doing much more than I should. Finally, one day when I was trying to create a garden on a deep slope in 90 day heat, it hit me. I just couldn’t do it. All my spoons were gone. I faced the fact that I could not power through anything without the engine. No one could or still can understand this illness. One day when I was so sick I could not get out of the bed, my mother and niece pestered me for at least half an hour to get up, come on, just get up. I didn’t have the energy to explain once again about this illness. I just turned toward the wall until they left. I don’t know why people insist on being in denial. Only after I moved in with my mom for our mutual benefit because she was falling alot and I was trying to get settled into the proper protocol, did she finally accept that I had a chronic illness. It’s invisible to people who don’t want to see and only visible to those seeing you day in and day out so they see the changes. Anyway, I managed to care for her until she passed at 90. Now, I’m lucky to have 2-3 good days in 10 when I have enough spoons to survive half of an average persons day and it takes all my spoons. I then need 3 days before I have enough spoons to do anything. I moved in June and very little has been done and no one can understand why. I hope I can use this to get thru to everyone how it feels to have ones body attacking itself constantly. Thank you.

  • sunshine5286

    I’m 29 and have had RA since I was 18 months old so if you ever need someone to talk to I’M here. Hang in there

  • Lisa mullin

    I have been blessed with very good doctors and a very supportive family. I doynown IV every week. I like that it gives me some control over my disease.

  • Julie

    My daughter’s grandfather has that!!! He was diagnosed after my daughter was born and I have never gotten so educated as I was those few weeks in learning about it and then waiting for my now ex-husband to have the blood testing done to see if he had it. Thankfully he did not. Prayers that you have found some great doctors in dealing with it. My ex father in law drives 2 hours to see doctors and receive transfusions

  • Cara Ricci

    I have rheumatoid arthritis. Bless your friend for trying to understand. Most often ppl dont ask, just form their own opinions of why I don’t feel well.
    I just helped my husband move some furniture around in my sons room and can tell I won’t be lacing my shoes or hooking my own bra for the rest of the week. One of my so called friends actually said “why don’t you put some lipstick on once in awhile”. Because half the time I can barely dress myself….ppl are insensitive and dont care to really understand one another any more and are just cruel.

  • Chuck

    My wife has lupus, diagnosed almost ten years ago. Been to all of her appointments and different treatments. Only now after reading this do I truly understand her day to day struggles. It all makes so much more sense now. I am saddened by my ignorance and know how the best friend felt. … Thank you as my wife is my best friend. I’m going to go hug her now as she is currently resting collecting her spoons for tomorrow.

  • Ariana

    Thank you for writing such an accurate depiction of what it is like to live with chronic illness. I have suffered for 7 years with a chronic neurological disorder that makes me unable to focus my eyes for too long, stay awake, keep my balance, etc. It is so easy for friends to abandon you along the way.

  • emd04

    no.

  • Gerry Buck

    I was diagnosed with severe osteoarthritis in 1995 [was a truck driver for almost 25 years] and it was difficult to just get up and move around. In 2000, I was diagnosed with type 2 diabetes with diabetic peripheral neuropathy [feet & hands] I got a lot of hard looks from people when I parked in the handicap spot, some even said you don’t need to park there, there’s nothing wrong with you. By the time I got into the store, my hips were on fire & I needed an Amigo. More looks and harsh words. I have since developed a hard skin.
    Yeah, I hate this. Before going anywhere I have to plan out what I need to do, and hope my hips and knees will let me. I am developing bone spurs on both knees.
    But, by the grace of God, I survive each excursion and day.

  • Mary lou

    Thank you Christine. I have OCD and it is so difficult to explain to family and friends what it takes to just get out of bed sometimes. God bless you for your courage and insights.

  • Lisa Mullin

    This just speaks to me I have a rare genetic form of COPD called Alfa 1 AntiTrypsin deficiency. Every day is different for me it is so hard to explain to others why I can’t keep up so I use this. I also am involved with a non profit that helps other people with other rare diseases. I am to give a short talk and would love to use this spoon theory to help the caregivers that attend understand what their loved one have to cope with every day.

  • darlalynne

    Tracia-yes focusing on positives, and remembering to halt our negative self talk is very important. And I agree both meditation and nearly everything we try that gets us away from the ‘it’ is a good step. I use gardening and watching movies and even though I will pay later in other ways if I am not careful I enjoy being able to paint a room or make ceramics. Glad you have a supportive spouse that is a huge bonus. Take care

  • Alice P.

    You sound just like me. I also have arthritis so I have pain and exhaustion.

  • Jan

    Thanks for sharing. My daughter has MS, several years ago when she was still able to walk, but having a good day, she parked in the handicapped parking place. When she got out a man yelled at her for taking up a place when she obviously did not need to use one. She ask me what she should have said to him, told her she did not owe him an explanation, but if you wanted to say something just tell him that today is a good day, but that some days you can hardly get out of bed.

  • TexJess

    Hi Caitlyn, Sorry to hear about your sister. It’s really great that you are here learning more about chronic illness. There is a fantastic resource for those of us with this disease called Hashimoto’s 411. It’s going to be a tough road, but your sister is lucky to have you as a support system.

  • Lois Buchanan

    This is the best explanation of what lupus ‘feels’ like! and I love the use of the spoons as I have always loved to cook and if I invite people to dinner I explain that I used a lot of spoons today, but I saved the best for last, to spend time with them!

  • Youngfighter

    I’m currently 19 and I’ve had Rheumatoid arthritis since I was 13. Explaining this to my friends when they believe only older generations get arthritis was hugely difficult to start with, it got to the point where I look healthy so I stopped tell friends. However, reaching the age where everyone I know started drinking and I couldn’t due to medication, I would get questioned constantly and it got to the point where I wouldn’t go out. Being able to explain my condition using the spoon theory and knowing others have understood better helps so much. I thank you from the bottom of my heart

  • loveit

    I loved reading this. She explains chronic illness very well. I am living with type 2 diabetes, COPD, Asthma, Common Variable Immune Deficiency. I take a lot of medications and most of my family give me “the look.” I feel like I am always having to explain myself. My feelings get hurt a lot due to the questions, comments, and stares.

  • Julie

    Awesome explanation. As with another comment, I have anxiety and depression. Going to work everyday, even though I love the people I work with, takes alot out of me. Come the weekend I don’t want to go out or do anything except recharge my batteries. My friends don;t understand why I never want to do anything.

  • Tracia Baxter Kilwien

    I too feel that the more I refer to or think of myself as ‘having’ (fit any chronic disease here) then I feel depressed and the thought of being ill becomes much of my thinking.

    The more I ignore the ‘tittle’, I have noticed I have longer stretches of happiness despite my diagnosis.

    I have practiced meditation or self hypnosis (as some refer to). While consciously focusing on my body healing with each inhale and exhale I make. I picture my body healing itself in all the wisdom it was created with on my inhale and on my exhale I picture healing going out from myself and to others.

    By nature I am a deeply emotional person who has little patience for injustice and use to be the first person to spend great amounts of energy trying to persuade others and comforting the person at the end of that injustice. Even the thought can drain my energy without ‘doing’ a thing. This kind of conflict as well as so many other sources of conflict drains large quantities of energy if I am not conscience of it. When I become aware of what messages in my head that I am giving my energy to that is when I try to use meditation for rebuilding my energy. I do not always answer the phone or the door when I have little energy to use. It has been the cause of much grief to people who take it personally. I do not choose to explain myself much of the time and at other times I just say I wasn’t feeling well which at times is met with scouring looks of disbelief in their misguided understanding. In some cases I have told people of my diagnosis for them to understand if it’s important enough to them to know me. As the case of the ‘spoon’ analogy given above.

    Notice however the analogy of ‘the spoon’ does not give example of the emotional draining that occurs with much of my energy. Rather it talks mostly of the physical drain (talently very descriptive) as well as the mental drain of making decisions all day for where your energy is spent.

    Kudo’s to the article as it has helped me put words to my own journey with chronic illness. And Kudo’s to you Darlalynne for expressing the negative energy that can be created when focusing on what a chronically ill person DOESN’T have. The blessing in my life is that thoughts that surround my illness can lead to an attitude of being a victim. My “Oh poor me” thinking was taking the life right out of me bit by bit each day.

    My diagnosis was made in 1987 for one set of issues and the other in 2001 for another set of issues so I have wandered through a myriad of self testing to understand myself in what works and what hinders me. At this point I have learned to keep my time limited in situations of negative energy (ironically self loathing is one of those), Keeping mindful of the thoughts that I entertain in my head; Foremost being grateful, “Attitude of gratitude” in times I have no energy for thought I go back to meditation some times it means taking a nap. One analogy is feeding: what I feed my thoughts, what I feed my body and what I feed my spirit helps me from giving up.
    I’m so fortunate that I have a husband that supports me. He never wakes me when I take a nap. He meets people at the door and or phone and tells them I’m napping when I have no energy.
    Having a sense of purpose I think is very undervalued in our culture. My spiritual beliefs have given me the desire and passion to walk in life with the purpose of learning and sharing new ways of loving others.
    We will always have the choice of viewing things as positive because in every situation something positive exists. 🙂

  • Mandee

    Oops- I forgot to thank you for your wise words….Thank you!

  • Mandee

    Hi Melissa- Sorry you also have Chiari too. Thanks to Mark we now have a golden explanation! Hope your Friday is fabulous!

  • Melissa Brown

    I also have chiari, and this is golden to explain to others!!!

  • merelily

    The most important thing I’ve found, only having been diagnosed about 4 years ago, is do NOT SKIP meds. If you miss a dose, you will pay for it three days later.

  • Amykinz

    Would I be stepping on any toes if I used this to explain mental illnesses to friends and family? You see, I suffer from General Anxiety Disorder and Clinical Depression. Often times, I don’t have the mental stability or the willpower to get up and deal with things that need to be dealt with, or my body aches and too I’m emotionally exhausted and frustrated by these symptoms. Sometimes, I feel like getting up and going to class is all I am able to force myself to do before I need to be alone for an extended period of time to ‘recharge my batteries’, and many people don’t understand this. A lot of people tell me that it’s my attitude, or I NEED to get out more in order to feel better, and Depression and Anxiety really don’t work that way. While my medication does help me handle these issues better, these illnesses are due to, to put it very simply, chemical imbalances in my brain, something I can’t control. I feel like this would help a lot of people understand that while sometimes I would LOVE to go hang out and do something fun, I don’t have the energy to keep calm and socialize with people that I don’t know, or that if something I’m not expecting happens or goes wrong, I can have a panic attack.

    I’ve had people often ask me what it feels like, why I can’t just buck up, “do you really need to take that medication?”, “can’t you just try exercising more?” and, while I do understand that most people are trying to be helpful or supportive, I’ve never really known how to best describe how I feel.

  • Kristen Chrzanowski

    I have used this to explain to my kids & family how I feel & function through the day. Thank you!

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