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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  • JuJubaby

    Thank you so much for sharing this anecdote. I have Fibro Myalgia and am in constant pain, chronically exhausted, plagued by migraines, depression and IBS along with about a dozen other things. I have difficulty explaining how I feel to others. I don’t go around moaning and complaining about the pain etc, I just try to get on with life and remain opositive, concentrating on the things I can do instead of what I cannot do, so most people do not believe me when I say I am ill which makes me feel like a malingerer. In the future I will try to use the spoon analogy to explain my situation and see if it helps. My husband was recently in pain in his body and tired because of a flu virus and he said to me, “Is this really how you feel every day,” and I replied, “yes!”. He then asked me how I could possibly stand it and if he felt like this every day he’d be taking himself off to a euthanasia clinic in Switzerland! Although I did not revel in his illness I was thankful he had a glimpse of what I endure on a daily basis. I would not wish it on anyone.

  • A M Jenner

    This so exactly describes my life with arthritis!

  • Donna McLellan

    That is the most ridiculous post I have seen in years, by Samanthe. I know it is old, but everyone suffers in their own way. Fibro is a disease of the nerves, has nothing to do with muscles. I expect to see people with compassion on here, and your comments are out of line. THIs is a coping site, a support site, but it is ANYTHING but a contest tos e who ahs the worst illness for God’s sake! I have never seen anyhting so snarky come from a person who she herself is sick, so should be having empathy for people in pain. LOTS of us hqave more than Fibro, I am a 2 time cancer survivor, but Fibro made it all worse, and so did sleep deprivation for Restless Legs Syndrome (which is a disease now, offcially) The spon theory works with RLS, too or or any chronic disease that saps our strength. have some respect or just don’t post. Really simple. Do not know why the mods let your comment go up at all! NObody in my support groups would ever talk to anyone the way you have. Do not criticize or name or shame if you do not know what you are talking about. We are trying to gain respect for our respective diseases , not compare who is sicker. What is the NAME of this site?? Think about it, Samanthe. We ALL have issues here.

  • Love this and had tears after reading it. I have Fibro and it is hard to explain how it feels. Thank you so much for sharing this and huge gentle hugs to you! <3

  • k

    I’ve read this before, but it is still so powerful and meaningful. Thank you. (Considering a ‘spoon’ tattoo)

  • I am in tears right now to think I might have a way to have someone understand what I go throw thank you so much for coming up this and sharing it. I have I.C. and a bunch of other stuff that goes with it. thank you again

  • Pam O.

    I have fibro among many other things like chonic pain from degenerative disc disease, and arthritis, I also have major depressive disorder. Goes with the territory of chronic pain. However when someone asks me about fibro my explanation to them is imagine having the flu and the aches and pains that go along with the very high fever it brings with it. Well imagine living everyday of your life with those aches and pains from the fever but nothing helps to bring it down. Some days are better than others but. Which would mean my fever goes down for a while and then up again. More ups than downs.

  • This is a powerful article. I have 4 out of 6 types of Psoriasis and one type on my hands and feet break openin bleeding fissures. There are times during a flare when I can barely walk, let alone join in on yoga class with co-workers. I start the day out stiff and sore. The rheumatologist called it a little rash yesterday. It was like no one understands. I told my husband that I wish someone treating me would have gone through what I had so that they didn’t question the why since I don’t look sick.

    Thank you Christine for being so giving with your story. It.makes a difference.

  • Friend of Rebecca

    sorry, I mine OUR eyes, not yours of course…

  • Friend of Rebecca

    Thank you, thank you very much for opening your eyes in a different way.

  • So glad I found this. Thank you so much for putting your magical words to paper! Perhaps you’ll enjoy some of my blogs: http://www.themuseisworking.com

  • Your ignorance disgusts me.

  • I can’t figure out what’s wrong with my cell but I’m not Kylynn, my friend is.anyways.

    A neurological malfunction of pain processing is a NEUROLOGICAL condition, not a psychiatric condition. Do you even understand the difference between psychology and psychiatry? Fms is a result of a physiological error, its not “in a persons head”. Just like how with rheumatoid
    disease my immune susyem doest properly process information. If fibro is in sometimes head, then so is my autoimmunity. The difference is that white blood cells act differently from the nervous system. Your nervous system id a way of perception designed for survival. When your senses are compromised, you have a PHYSICAL problem.

  • amandagreene1013

    Wow,..this moved me to tears. I was recently diagnosed with Sjogren’s. Not nearly as bad as Lupus, but it still affects me in quite the same way. I may start off the day with more spoon, but by the end of the day, I am still depleted. I will use this so much in my lifetime. Thank you for sharing.

  • I love this! It’s a great way to explain to people. I’m so glad I found this.

  • Day

    I have diastolic dysfunction Congestive Heart Failure and was diagnosed less than a year ago. I am still learning the “rules” and think this is a very good lesson.

  • I absolutely agree 100% – I have Fibromyalgia and neck problems and migraines and the list keeps going….I run outta spoons everyday and can never get them back as a matter of fact I’m in the negative spoons count – I Have Dishes to do, laundry, bathing is horrible, shaving, washing my hair, Vacuuming I give up on can’t do that anymore..Hurts way to bad. My question is how do I get back to positive spoon counts……Please tell me.

  • This is beautiful. I have pulmonary hypertension and don’t look sick and this is the best explanation I have ever come across in 15 years. Thank you for this!!!

  • Lisa Fleming Philpot

    Oh you are a cheeky thing arent you??!! Fibro sufferers have a mental disorder and its all in their heads?? WOW thank you for clearing that up for me! I didnt know that having fibro due to a host of physical issues made everything all in my head. So having arthritis of the back is in my head. Scoliosis is in my head. Three herniated discs for which Ive had surgery and will have to have several more are all in my head… wow how did my scar get there on my lower back then? Thats a neat trick isnt it, creating a real scar from an imaginary surgery. Severe right sided nerve damage, to the point I should be in a wheel chair… thats in my head too. Nice, thank you for telling me my every day fight to avoid a wheel chair is imaginary. Neuropathy, and peraformis syndrome, and sciatica again in my head…. Chronic Fatigue Syndrome … another one in my head… actual cancer where I had to take medication that made me throw up for weeks… in my head. All of this from giving birth and pushing wrong or was the whole pregnancy and birth all in my head too!!??? You dont have a chronic condition so you dont know and cannot there for pass judgement on something you know f**k about! I will upon you for the rest of your life a condition NO ONE can see no one believes, doctors tell you you are faking it and no one gives you physical therapy or medication for you to find relief. IT will cause you more pain than fibro and MS and CFS and cancer put together. It will NOT be able to be diagnosed and you will never know a moments peace UNTIL you apologize here to everyone for everything you lied about and refused to believe about them and swore we have it all in our heads because a half assed study told you so…..!!!!! Then you will realize whats in your head and what is real…. YOURS NOT OURS!!!

  • Leon

    People who dont know what the word “psychiatric” means really shouldnt tell other people what kind of disease theyre experiencing.
    If those people are also trying to tell you what something is, when the best doctors and researchers have a number of theories on what it could be or what could be causing it, then it is safe to ignore those people.

  • This was excellent and at last I too can understand better in my self now and what my body screams at me to do and not to do and when I push myself way to far.. This spoon theory was at first hard to understand but in the end I did. I too suffer from Lupus and Fybro and two other illnesses and now have no support or any one to understand. They just find it easier to leave me at home and in fact I don’t even get asked any more!! Yep I too could use this spoon theory but I think I would end up too fatigue to explain it and to be honest they wouldn’t be as understanding as this friend was..

  • pyro-dan

    totally agree with you Jen! wonder how old Samantha is? or if she has someone in her life with these prob’s and just dont want to admit there is something wrong with them? she is the one who would call the rest of us lazy! sorry had to respond to someone =( was getting upset with her comment, but I should be use to it! had an ex wife and this is why she is ex!

  • pyro-dan

    Wow I have been through cancer 3 times and yes chemo and radiation all 3 times, then I also had to have a stem cell transplant! (very high dose chemo for 7 days straight and radiation 7 days straight.that was 1995-2000. and on to of that I had a muscle disorder that left me paralyzed the first time i got sick in 95, and had 40-60 doctors looking at me for the first month, till they decided it was so rare that the cancer caused this they put me in there medical journal (it was a university hospital ) and canceled my bill that was well over 1,000,000 with in the first month. I did how ever learn how to eat and walk again all on my own cause I needed more “spoons” and could not stand the thought of someone ells taking care of me (did I say how old i was when this all started? was 18 when i started getting weak was 25 when it all hit the fan and kidneys shut down and i could no longer walk or swallow for that matter) but I am now 43 and blessed to still wake up in the morning to take 25-30 pills just to get me out of bed! then I now have spoons as well and some days i start out with less then normal (which is getting more and more of these days now) and some days i have more!! But this story,, I just changed the word lupus for the words cancer and muscle disorder and can now have my hole family and friends read it, since ive never been able to (or really want to) explain why I have to plan every min of my day down to drying off with a towel after shower to go to bed! And just maybe they will stop trying to push me into stuff I know ill spend the next few days to the next few weeks paying for! I do have a new heart valve and pace maker now since they messed up my old one with the side effects of all the drugs and radiation but that goes for just about every part of my body these days!
    But I cant wait to have everyone I know read this story! it so fits everything I go through in a day! and alot of people I know ether with lupus or cancer! thx for sharing your story and being brave enough to make it public! it will help so many that cant find the words them self’s to explain why they cant do something instead of being called lazy when the others have no idea whats going on!

  • Michelle Johnston

    Samanthe having read all your comments on here, do not judge others, if they say they are ill they are ill. Who are you to judge? What right do we have to belittle others illnesses? I have nerve damage caused by a surgeon, who didn’t follow strict guidelines. I never diss others who are ill and never would. Patients end up with mental illnesses associated to the pain and loss of deep sleep.

    We should not judge.

    Mental illness by the way is just as debilitating for some as your symptoms. You should be thoroughly ashamed of your self. AND you’ve made me use up 2 of my spoons MRS!!!! People like you make me so angry because you are too self centered to see or empathise with others!!!

  • HOPE

    Samanthe you need to read. You need to understand. you are so misinformed that it is unbelievable. I know that I am late coming into this conversation but your comment was appalling. I suggest reading and thinking before making such misinformed comments like that I wish your life and everyone’s well but come on, that was degrading in tone and obviously not at all in the spirit of support and kindness.

    “Before you assume, learn. Before you judge, understand. Before you hurt, feel. Before you say, think.”

  • Jan V

    Requesting permission to use this story in my church ministry which is about Inclusion and Accessibility – raising the consciousness around people with disabilities. Our church is Unity Christ Church in Golden Valley, MN and I am the team leader. We present experiential workshops around many topics and Invisible Disabilities (one of which I have) is a large focus for us. Please let me know if I need to write a letter, to whom and to where. Thanks!!!

    Jan Vandermey, IAM Team Lead, Unity Christ Church in Golden Valley, MN
    [email protected]

  • Babystarsparkle

    you have explained this better than I could. My spoons are limited too. Costing me a few “close” friendships. So hard to explain to people… esp when Im, due to me not being able to attend things etc asked why Im so tired, I dont work. I’m a mother of 3, with multiple illnesses including fibro/M.E/CFS as well as serious joint problems, walk with crutches, low immune system etc. But, I find if people cannot “see” your problems they dont think you have any.  Im tired. Every day is an actual struggle from the minute I open my eyes. I am 30, and this all started from the age of 12. A few friends have asked how I do it. But thats less than a handful for sure.

  • Kaycenichole

    your words are wonderful.. i am 21 and have been putting up with an unknown illness for months now. been back and forth to the er because of dizzy spells, weakness, odd pain in my arms and vision problems… but no one seemed to understand because on the outside i “look fine”. now they tell me “maybe we should look into the possibility of MS” this scares me to the deepest part of my soul… so i am praying that i don’t have it and that all this will soon pass.. but if by chance it does not, i will be counting my spoons and using them to explain to people that just because i look fine, does in no way mean that i feel fine. thanks

  • Michelle

    WOW, Thank you, I have just sent this to my mum and sister

  • Nicki S.

    Thank you. This helped my husband understand me.

  • Marion

    Sorry, how to ask for permission?… A friend do need this article now, …. and so I kindly ask for permission belatedly…. thanks in advance for your understanding

  • snowflake

    Someone had said they were told they were too pretty to be taken seriously by doctors.
    Try being too fat! There are so m many medical professionals prejudice against fat people! I have Cushing’s (the fat ugly disease). A lot of doctors don’t know what Cushing’s is or what it does, so even telling them that I am fat by disease, not by harming myself, doesn’t compute for them. I have every new doctor looking at me like it’s my own fault I’m sick and unhealthy because I’m fat. I think a lot of them don’t care about me, they don’t care if I’m sick, they don’t respect fatty. Smokers and alcoholics get more respect and sympathy than fat people do!

  • Creekermom

    IT is so HARD to get a TRUE diagnosis especially if you have other illnesses/diseases that mask these ones. Chronic pain and whole other world to deal with and its limits are endless.

  • Creekermom

    TRUTH

  • Janmsnow

    Such a great analogy. If you have more than one illness you have less spoons to start with however.

  • i was told on thursday by my rheumy that maybe if i wasn’t so pretty and didn’t do my hair that doctors would take me more seriously.. i dont have the chronic ill appearance therefore how can i be as sick as i am on paper. it’s nearly devastating to hear. the person im with tells me it’s okay calm down after the appointment.. i say “i feel like i need to go cry my eyes out”. people don’t understand what its like to be in so much pain you can’t get out of bed on a daily basis and then be told “well you dont look sick at all so how can you be?” it’s not the first time and I’m sure it won’t be the last. I’m only 23 and i have chronic pain from Fibro and Major intestinal mal rotation issues and a lot of other issues as well. Im positive for lupus as well. My list is huge and they still cant figure me out so i get the brunt of the frustration, The good doctor will never admit he doesn’t know whats wrong with me so of course instead he gets angry and says it’s all in my head and i just need counseling. It’s insane to go through over and over again. 
    I tell everyone i can about the spoon theory to help them understand me. I look fine and try to save what little bit of self dignity i have and look still like a young woman so I guess that means im not well. Or im told im too young for medications or too young to be in so much pain. I didnt know pain discriminated or being sick was something that was worse with age. Someone show me where this is medically proven?!! The spoon theory is amazing =]

    Facebook.com/ashes1534 glad to help anyone with fibro questions or chronic pain disease issues 

  • karen emerick

    hi chiatine. i have chronic lyme.  your spoon analagy is wonderful.  thank you for your story.  karen emerick

  • This is so beautiful. My friend and I are both sick, and get the same “you don’t look sick” I have thyroid disease and a brain tumor, she has MS. Now we will both have spoon tattoos so that we “always have one spoon left” Thank you for this. It explains something so difficult in a way others can start to understand.  I will be getting the poster! but would also like if the  came in card size – to carry in your purse or hand out to people. 🙂

  • Amberlee Batchelor

    This is perfect!  Thank you so much for sharing this.  I have Sarcoidosis and Fibromyalgia.  So many people look at me and think because I am overweight I am lazy.  Once people get to know me they realize I do so much more than I probably should (and yes there are days I have no spoons left because of it).  I appreciate hearing there are others out there who have a clue as to what I go through.  Hugs

  • Fjmclm

    Everyone should take the time to read this. There are numerous illnesses that are invisible. MS, RA, HS, CFS, FS, etc., etc., even so many cancers….so many illnesses. Some that people don’t even want anyone to know they have because they’re so self conscious. So many suffer in silence or are misunderstood, accused of being lazy, etc. You can’t know what its like to feel horrible inside but look perfectly normal. No one understands the limitations, the sense of loss for things that can no longer be done or enjoyed, loss of ones former self, former life, job, plans for the future. Though many aren’t life threatening, they are mist assuredly quality of life threatening. This is an excellent way to explain it.

  • Erica_veritatis

    What a brilliant article

  • Diane

    Hi Shay,

    What is PSC?  I know what the rest are.  I am also gluten-intolerant so I know a little bit how you feel.  So sorry.  🙁  My cousin has had Crohn’s for years and he’s young.  Destroyed his marriage, job, and life, just about.  I will Google PSC.  Take care {{{{Shay}}}}.

  • Amazing! I have Crohn’s, PSC, Celiac and had my colon removed due to cancer. This perfectly sums up what each and every day is like for me. I’ll be forwarding people here when they ask me what’s it’s like to be me. Thank you for writing this!

  • Diane

    I truly loved reading your article and also feel so bad for you at the same time, but you sound fairly upbeat about your illness.  Not many people who are suffering with some disability or illness sound that way at all.  I really admire you!  I wish I could copy and post this at facebook.  I think it would wake up some people, don’t you?  Do I have your permission to copy it?  I have all sorts of different illnesses, most of them *mystery* illnesses, but I feel a bit better just reading your article about the spoons.  Loved the analogy!  Take care.  Hugs, Diane 

  • Debbyb617

    Sorry..I didn’t mean to type “have” to in CAPS. It’s my eyes and my teeny phone..LOL 🙂

  • Debbyb617

    I get it. Although I don’t HAVE Lupus, I have Fibro, CFS and an injured back. I’m also widowed with a disabled child.
    I get it. You have my utmost respect and concern.
    Blessings…
    Deb

  • Nickyledez

    Currently pretty sick myself.. this read moved me to tears… girl, you a fighter, and you got more heart than me… really liked the analogy as well..

  • Sandra Raftery

    It’s called Flex Formula. The main ingredient is boswellia serrata clinically studied for osteoarthritis and joint function. There have been positive effects in some chronic inflammatory diseases suchs as uc and Crohn’s.

  • Upc_deaf_interpreter

    what is the supplement 

  • Sandra Raftery

    Hi Donella
    My 10 yr son has UC, Crohns ,Gastriti and now Juv.Arthritis.  I have put him on a supplement that has taken away his pain and actually given him alot more energy. The leading Dr at Monash in Melbourne approved of the supplement.  If you want to know more please let me know.  It really is a cruel disease.
    Sandra

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