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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  • Tara

    Yes. I lost some spoons to tears and such yesterday.

  • Tara

    Also, to those who have said things like she’s not “physically sick”, I don’t have enough spoons today to let you too far under my skin, but while the author is obviously sick with Lupus, even a person who is mentally ill has to take life a spoon at a time, and illness is illness, with the vast majority of mental disorders having a physical link in the brain or body chemistry. People also develop depression and other disorders when struggling with lifelong chronic disease. People fight and fight and fight… And sometimes at the end of the day they’ve been fighting for so long and feel there will never be enough spoons in the world to make their life less miserable, and they give up. This really isn’t the place to leave comments lightly, when so many are at the end of their ropes

  • Tara

    I am in love with this, as I sit here in the hospital on a beautiful weekend, feeling frightened because Doctors I have never met are messing with my spoons. It is so frustrating when a doctor changes something without discussing, mentioning, or explaining it to me, which seems to happen in hospitals all too often. It just isn’t fair to the patients or the nurses. It’s scary enough having electrodes attached to your head and cameras on you waiting for you to seize. Is it just me, or is it crucial to the rest of you to know exactly what you are taking, how it works, when to take it, interactions, etc? Does it scare you being in the hospital when you are so used to controlling your medications and medication times? They always say don’t shoot the messenger, and all too often doctors put nurses in that position— I adore nurses but while I acknowledge that they didn’t make the change, and I don’t get mad at them, they have to be the ones to see me have a meltdown and cry and turn all that anger into tears when my frustration hits the top. That’s not fair to anyone. The doctors who come in and explain in detail, provide literature if requested, and ASK before messing with my spoons are the only ones I can handle. Whew. I needed to vent.

  • Eric

    Er, don’t feed the trolls. At least not ones that have zero creativity

  • Tia

    I look relatively healthy, take long walks and do karate. I choose to spend “good” days doing good things. Life is often a struggle but it’s one I wish to enjoy. Like spark13 I have IC too. Add neural damage in lower spine (I’m not supposed to be able to walk), nerve entrapment in neck, Sjögren’s syndrome (sometimes called mini lupus) and a handful of other issues and I’m a ball of pain. I have learned to pick my activities on the bad days and try not to do everything I want on the rare good one. I’ve never had a pain free day in my life. However I have learned how not to be a miserable cow by realising those around me who understand can appreciate what I’m going through, those that don’t aren’t going to. I now have an analogy to pass on to those who may choose to listen. many years ago a friend said to me “you can choose to be a victim, a survivor or someone how lives their live to the full. I choose to live my life to the full, some days the full is ankle high lol

  • glorrierose

    Are you serious?

  • s2s

    I’ve only read a few of the more off-the-wall comments here, but they’re reminding me of some of the members of a support group I went to years ago, and stuff I’ve read since about out-of-whack biochemical impacts associated with health problems potentially affecting someone mentally.

  • s2s

    Whenever I “don’t look sick,” it’s because I’ve been taking exquisitely good care of myself and staying within my limits.

  • Todd Austin

    This is excellent. You owe it to yourself and your readers to hire an editor to remove the errors. It’s worth getting it right.

  • Mandy Amanda Michelle Feely

    One thing you didn’t explain to your friend is when you have a chronic illness but didn’t have it all your life, so you know what it was like without the symptoms. The desire to return to the life you used to know is always lurking, waiting to pounce and make you cry at the right moment. Crying also takes spoons, btw.

  • Debra Seyfried

    I have to say that this is very well written and so true.. I am an epileptic and also have tourette syndrome, to put it the way Christine does in this article, I run out of spoons way before dinner time because from the moment i open my eyes my tourettes start to wear me down inside and out. I have a close friend with lupus and i can see the same things with her like this article says, We understand each other and not many understand us. Thank you for putting this in these terms, aka- spoons.. Perfect !

  • Aryan Verma

    I don’t believe for one minute your’re sick. Not physically.
    online chat

  • Reverend Earl

    Yyyyyyyyyyyyyyyyup! Durn straight thar James H! Hard ta read?? Well if’n ya knows yer redneck hillbilly vernacular, then ma writin’ should oughts ta make perfect sense!

  • James H

    On the bright side your dad seems to understand you. 🙂

  • James H

    He’s just having fun, albeit hard to read. He is satire folks!

  • Reverend Earl

    Well ma original post was actually *makin’ fun of* the kinds of ignorant, narrow – minded folks thet be skeptical of folks thet be sick but don’t look it too much! Couldn’t ya tell ba ma hillbilly speak an the way I brags’ bout ma 65 IQ an 3 grade edumacation? Nai hai many folks would actually make them kinda remarks an be serious bout it?

  • Sparks13

    You know what Sparkles, I stopped dealing with my mother for months at a time over the course of the 47 of my years she was alive. I know that we don’t all get along with our mothers because a) Sometimes we’re just very different people (our case), and b) Some moms ARE bad people. The majority of moms however are basically good people who love their children, and therefore Amanda’s default shouldn’t be ‘Oh, I guess my mom’s an unfeeling bitch.’. My first course of action if I were Amanda (had she asked), would be to go to a sibling, other family member, family friend, or her doctor, and ask them to talk to Mom. Tell her that yes the illness is real, and that her attitude sucks (to shorten the story). If that doesn’t work, THEN move on to more negative assumptions. Especially since Amanda may not have any other choices right now except to continue to live with her parents.

  • Sparks13

    I don’t believe for one minute your’re sick. Not physically.

  • Sparks13

    Obviously, because the friend wasn’t getting it. But unlike YOU, she was willing to learn.

  • Sparks13

    I hope you find out soon, up close and personal, exactly what chronic illness is like. No one asked you for a f***ing thing. Thank goodness our illnesses are only physical, and not a soul sickness like yours. You have to be one of the stupidest people posting here. Do you really think anyone CHOOSES to be chronically you repulsive twunt?

  • Sparks13

    I hope you get your other 50¢ back soon.

  • Sparks13

    Piss off. I too hope Karma finds you swiftly. You deserve it.

  • As you say, MOST here are supportive. Sadly the trolls get responses and therefore come to the top of the feed if one sorts by newest. Keep on supporting your relative and thank you for posting.

  • Reverend Earl

    Wa thanks ya kindly thar Sparkles. An a hardy durrrrrrrn straight to ya! Thar jest aint no way on God’s green earth thet some fella wuld actually write likes I do, an brag bout figurin’ sumthin’ out wit his 65 IQ an three grade edumacation, wit-out it bein’ some kinda joke.

    An es it jest so turns out thet fella thet gots me as his alter ego, be sum no common sense pinko commie honyock wit a whole alphabet soup of diagnoses , includin’ sumthin’ called autism thet everyone talks bout! But I say they aint nuthin wrong wit thet fella thet cain’t be cured ba goin’ ta church, prayin’ ta god every day, an wukin da fields from sun up ta sun down ta exorcise them demons thet hath taketh hold of his soul! I thinks thet be wrong wit most da folks thet gots all them fancy alphabet soup diagnoses like ADD, PTSD, an all thet horse dookey! They either spoilt rotten or dey possessed ba the devil! But ya ain’t never gonna git sum over edumacated, pinko commie psychologist ta agree wit thet, nai are ya?

    Nai you take care of yerfef nai ya hear!

  • Sparkles

    Yep. I’m serious now when I say I think this theory should also include something about telling these types of people (you HAVE to make cookies!) to get lost. Gosh, you don’t feel well and they are demanding you explain? No. Not me. I can’t do it means I can’t do it and that is full stop, period. These people have made me so angry today. I want to be right there with every single person and stand in front of them and say, excuse me, let me handle this. Then rip the insensitive person a new one.
    Not constructive? Maybe. But it would make me feel like you guys had a shield of some kind to protect you from the jerks in this world.

  • Sparkles

    Maybe. Or maybe she is just a jerk and Amanda will need to understand that, understand she can’t change her and move forward with her own life. I know that is harsh. I’m just dealing with a situation that is similar, though not my mother, thank God. I am dealing with the Mom is God complex and Mom would never do this or that, Mom’s love encompasses all, and you know what? LOTS of people deal with mothers who are not at all what they should be. Lots of people stop dealing with their mother completely, and rightly so. I’m sorry to say it but if someone who is supposed to love you treats you horribly while you are sick, then they aren’t that great of a person let alone a mom. I am saying all this to give people the permission to believe their mother is not all that great and not feel they have to continue to accept that kind of abuse just because the abusive one is the mother.

  • Sparkles

    I was given this analogy a long time ago to understand what was wrong with a close relative of mine. I felt happy to find it and read it. I don’t know what made me look at the comments section. I should have avoided it. But I didn’t. There, as expected, was the judgement and happy chirping of being positive and not focusing on the negative. I don’t focus on the negative. This is about the opposite of focusing on the negative, if you ask me. But by all means, please, spout your absolute crap about these poor folks that didn’t ask for this and are likely happy to talk to someone about it. Are you all seriously saying you know better than the professionals who have told them to support each other? I know I got rude in the threads but I think there are those who deserve it. My suggestion, in case people didn’t see it, is for those who are dismissing this as negativity, is to take the spoons that are so upsetting you and shove them.

    This is a place for people to commiserate, yes, but also to lay down a burden that the rest of the people in their lives won’t understand. Do you think these people spend every moment complaining to others? Probably not. You get to a point where you keep it to yourself. No one understands. Then you find a place like this and you assume you will find supportive, understanding people. Most of them are, and then there are those who seem singularly cruel, somehow knowing that they will get a rise out of the sick people here. THAT is truly disgusting. I assume it is some twisted form of projection. You must really HATE yourself to turn it around and put it on these poor people here that are suffering. I’m sorry I read this far.

  • Sparkles

    I am trying to have empathy about your attitude, but today is a bad day for me. I have no self-pity. I am a strong person. Would you mind very much taking some of those spoons and shoving them? If you don’t like what is being expressed, go elsewhere. Do you seriously think you are the first person to suggest that thinking positively is the answer?

    Yeah. Shove it.

  • Sparkles

    Well, have you considered that this is your way of coping, and that it is something you have come up with to get through your life? If you have been sick from the time you are small, you don’t know the other side of the story. If you were healthy and happy and now suddenly felled by a serious illness that few people understand, you would still have to go through the mourning period that you probably went through decades ago.

    Plus, you are a Judgey McJudgerson.

    Is that better than being a Spoonie? lol

    These people ARE taking the hand they are given and playing it the best they can. But thanks for your attitude. It makes me grateful that I still have compassion for others. Some people are able to live through the sickness and still feel that for others. If you are not able to do that, you might consider keeping it to yourself. You had to know this was going to be a reaction, so why not go visit some site that shares your views.

  • Sparkles

    Lol I got ya, Rev! I understand you completely.

    The really sad part is that so many people are taking you seriously because you are saying exactly what so many ignorant, self-righteous, cold-hearted people say to those with chronic illnesses all the time.

    It’s funny/not funny that they think anyone would choose to live this way. Maybe a small portion of the people are scamming, I guess that is the truth. But it is not at all easy to get disability and when you do, it doesn’t cover much. That’s the life someone would trade for? Well, that’s up to them. Everyone I’ve ever known would trade their lives in a heartbeat for one of hard work and the ability to do it.

    I always say I hope they never get sick, or a person close to them never gets sick like that. If they do, though, I hope they run into lots of people just like them. I know that is mean, but they don’t have any problem being mean to others.

    Rev, thanks for highlighting the worst of the worst. I hope one day you do your spiel and everyone laughs instead of yells. One day maybe we will all be enlightened enough to have a laugh and say remember when people really thought that way?

  • Reverend Earl

    Well ya see, I thinks the fella behind ma personae actually be *makin’ fun of* the kinds of ignorant folks thet takes a skeptical attitude to folks thet be sick but don’t looks it too much. Ya git it? Nai ain’t you never dun heard thet laughter be da best medicine?

  • Theresa

    This by no means is about self-pity. Perhaps you need to understand empathy. I’ve had Graves for 5 yrs and have fought for every inch and day since my diagnosis and push myself to the limits to keep my life as fulfilling, normal and healthy as possible. But- the fact remains that I’m exhausted all the time, I’m constantly trying to keep everything in check yo keep by blood levels in check and not slipping backwards where dangerous health issue can compound. It’s a struggle and a fight every day and mostly a silent one because ” I don’t look sick”…but my friends and colleagues don’t understand when I can’t concentrate, or can’t meet up or go to dinner or do my own yard work..or 1,000 other little things…that everyday is a bargain to get to the next and sustain…I don’t ask for pity or really anything else and I push myself in ways most don’t (and do it rather silently,bargaining with guilt because I can’t get laundry done or make one more phone call..)..but I push in the direction of health and realize I can’t do it all so I have to choose health over fun, over stress, over simple things like if I’m not feeling well..but it’s hard to explain that to healthy people. That’s what this story/theory helps with.

  • Theresa

    You are an idiot and a troll. Take your idiotic narcissistic bullsh!t elsewhere. You need to be throat punched..especially for trolling blogs where people may be trying to get some grasp on a disease or critical condition..a friend of mine who is a lead Ph.D. Researcher for autoimmune disease..suggested reading about The Spoon theory..which isn’t by any means groundbreaking..however it is at the very least another way to help people understand what someone may be dealing with..then your comments are some of the first I see. You are exactly what is wrong with the world and Internet.

  • Deb Wunder

    The Spoon Theory kinda saved my life. When I was diagnosed at age 60 with hypertrophic cardiomyopathy, it took a year to get a surgeon who would operate on me. During that year, I watched my life get smaller and smaller. However, I had read TST a long time ago (sent on to me by a friend with Lupus), so I understood what was happening. It prepared me for having to make conscious choices about where and when to spend what little energy I had. It kept me going when I had to argue with a surgeon, and is keeping me going through the recovery (which is taking hella longer than anyone thought it would). It has helped me explain what I am going through to many people, including my (at the time) bosses. It may not be perfect, but I daily thank Christina for sharing it, since it has helped those helping me to have some insight into what is going on with me, and that what I am going through is normal for people with invisible or autoimmune diseases.

  • jessie

    1st learn to spell, 2nd I hope that you are never diagnosed with a disease!! You should straight go to hell for your thoughts!! You have absolutely no clue what it’s like to be sick! As a matter of fact you should go work 80 hours + a week to feed and clothe the poor, sick and the hungry you rotten fool!!

  • Janet

    Actually, God does expect Christians to assemble in fellowship with other believers (as long as they are physically able to) in order to keep each other accountable and to lift and encourage one another in our faith. The Bible says in Hebrews 10:24-25, “Let us think of ways to motivate one another to acts of love and good works. And let us not neglect our meeting together, as some people do, but encourage one another, especially now that the day of his return is drawing near.” Ephesians chapter 4 explains that all believers are parts of one body — the church — with Christ as the Cornerstone/head. Christ makes the whole body fit together perfectly by giving us unique spiritual gifts to benefit the church (teaching, encouraging, etc.). As each part of the church body does its own special work, it helps the other parts grow, so that the whole body is healthy and growing and full of love. Although we are under grace and not works once we are saved, in order to grow and thrive in our Christian walk, we need the support of a body of believers. We don’t go to church as a “work” for the Lord, but out of love and obedience to Him. If we find ourselves in a church body where its members are not genuine spirit-filled Christians, then we should prayerfully visit other churches until God leads us to the right one.

  • Kat Armour

    Well I hope you never get ill where you have yo use spoons to get through your day. I was born fairly healthy but I got sick just before my 21st birthday. Some days I’m in too much pain to move but have to up my morphine to get up & see to my family. My illness (very similar to Lupus) had me confined to bed or a wheelchair if I had to go out for 18 months. I needed 24/7 care as I couldn’t dress myself, needed supervision to shower incase my legs gave way. It is something I wouldn’t even wish on my worst enemy.

  • boxerdoglover

    So, if this is for real, what you said and you have “Reverend” in front of your name, I can guarantee you one thing, that the Lord will take you to your knees for acting like this. He has a way of showing you how to have compassion for others. I remember a Scripture, John 13:35 “By this all people will know that you are my disciples, if you have love for one another.” There is not a “lick” of love in your post.

  • Timmy Neeley

    You totally missed the point of the article Tim. The person she was talking to was one of her best friends. She was just trying to help her understand why she can’t always keep up with others. You should be ashamed of yourself….unbelievable.

  • rachel

    i was diagnosed back in 2010 and have had it twice more since (third bout as of right now). it’s hard enough dealing with it, but the fact that it’s such a rare disorder makes that even worse. i’m happy i’m not alone in this!

  • Selene Blackwell

    Any objection to me citing and referencing this as a source and discussing it professionally?

  • Barbara A Jones

    Agree 100 % that is what happened to me, grew up healthy never ever thinking I would get “sick”. I like the spoon analogy.

  • Tim Shandler

    EXCUSE ME!?!?!? but I’m in constant pain, and I am not going around telling others how to act and think. Especially when I have NO CLUE about them to begin with. you’re assuming this person isn’t sick, and then lambasting them for it. you should be ashamed of yourself.

  • I read this a while back and could not recall the source. A friend recently pointed me to it when I was talking about my “energy budget”. I tell people I used to have a dollar a day to spend. At the most difficult phase of my cancer treatment I was down to 10¢. Now I’m running around 50¢ and more than a little glad for it. It’s still frustrating for me and for everyone around me. I don’t *look* like I’m incapable of doing a full day’s work every day. The reality is that I can do a lot more than I could before, but not nearly as much as I could before that.

    Thank you for this enlightening and inspiring description of your challenges. It’s made a difference to my life and to the lives of those around me.

  • xeresaj

    This is reality. We are not your token to look at to make you feel better about yourself. We do not exist to “teach” you a lesson. This is what we deal with. No sugarcoating.

  • Victoria Deprez

    Wow! We all deal with good and bad health, if forums and whinning to other people not your thing then so be it but don’t make others feel that it is a waste of time please. I have RA Rheumatoid Arthritis and I belong to a RA forum which helps me to listen to others offer advice as well as receive it. Sometimes when I think I am having a bad day and find out that others are suffering more then I it kicks me in the butt to get motivated and do all the things I need to do at least try. So I wish you luck health happiness and a pain free life.

  • Veggielyfe

    @mimibklyn:disqus No need to be negative this is meant to be a positive uplifting article

  • Trent Grent

    I would venture your journey is very different, though just as valid, than that of a person who perhaps grew up healthy, later learned of their illness, and had to grieve the loss of a healthy body.

  • adorajane

    Yet you post all of this although you have no need to “join web forums to whine to other people”? I have Lupus and other health issues and reading this was something I could relate to, and that is helpful for people. This helped my kids understand and they enjoyed it as well. Negativity isn’t helping anyone or fixing anything. We all play the hands we are dealt the best we can and sometimes that is needing to feel like your not the only person in the world feeling like you do. If you don’t need that, so be it, just do it without judging others.

  • Kamorth

    Not everyone can do that. Some people need the support they get from joining online forums. Some people need some way to explain to others why they can’t do certain things. The people out there on youtube and blogs saying “this is my everyday life, look how hard it is” are often just trying to raise awareness of what’s often called invisible disabilities so that when people see a person in their early 20s sitting on a crowded bus instead of standing they will think before publicly reaming them out for being lazy.

    Honestly, it’s great that you can get through more easily than others, but don’t think for a second that your experience defines what it’s like for everyone. People have reasons for expressing and defining themselves the way they do and they don’t always explain what those reasons are.

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