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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  • CANCER

    WAAAAHHHH I’M ALWAYS IN PAIN POOOR MEEE

    shut the fuck up and quit your goddamned bitching. Everybody hurts you self entitled cunt. Take your spoons and go fuck yourself.

  • Loubie Lou

    What a great post! I suffer with chronic back pain, and chronic depression this sums it up so beautifully and in such a relatable way! It’s hard sometimes when people can’t see the illness!

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  • nedved1000
  • S

    I’m a full-time caretaker for my mom, who lives with chronic pain/illness, but since the tumor is located in the center of her brain she’s not qualified for chemo/radiation/surgery. As a result, she doesn’t look like a “typical” cancer patient (if there is such thing), and her surprising longevity with the illness lead to a lot of doubt as to whether she had the illness at all. Doctors have told her flat-out that they didn’t believe her – that she should be dead. Indeed, at the time of diagnosis, her prognosis was six months – tops. That was eight years ago.

    All of my knowledge is second-hand, but I know enough about the pain and discomfort she feels to know that I will *never* know the pain and discomfort she feels. Headaches – splitting, migraine-like headaches, all day, every day. From when she wakes up to when she goes to bed. Pain meds just take the edge off. She has no appetite and normally starts her day vomiting. She’s very skinny. Seizures have caused hernias and stiffness all over her body.

    She tells me, though, the biggest regret she has is the loss that you describe – the loss of choice. She was an avid reader, and now she can’t even concentrate on the lines in a book. She hasn’t read a book in years (although if she feels well enough she’ll ask me to read aloud to her, which I enjoy doing… I read this article aloud to her). She loved working outside, gardening, etc., but she can barely walk around the block without tiring herself out. Working. She always is talking about how much she misses working.

    Living with her all these years had led me to realize in abstract – what you call the spoon theory – that her actions the previous day has ramifications into today. (One time I scheduled her two doctors’ appointments two days in a row… that’s not a mistake I’ll make again.) She still always tries to do everything, because she wants to believe she can. Our biggest conflict is me worrying she’s tiring herself out, and her insisting that she isn’t.

    However, your article led me to understand anew, even after all these years, how completely her sickness affects her life. The balance, the planning she has to do as soon as she wakes up. Not only that. You’ve forced me to reexamine my own thoughts and actions with regards to her. How I should act more sensitively – not be full of “you can’t x, you can’t y, you can’t z” because I’m worried about her physical well-being that I don’t think about the effects of my words, however well-intentioned they are. It’s not up to me to remind her what she can’t do – she knows better than me what she can and can’t do, something I believe I forget, sometimes, as a caretaker. The best I can do is to lighten her load. If she decides that tonight is the night she wants to mop the floor, and that she has both the energy and wherewithal to do it, then it’s up to me to fill and carry the bucket, then take over as needed to finish the job. If she decides she has an extra spoon, as it were, to drive an hour for our favorite pulled-pork sandwich, then that’s what I should do with her.

    From the point of view of a caretaker, your perspective was invaluable. Thank you.

  • anna

    thank you for your easy to understand words for those that don’t get it.

  • Robin Johnston

    Thank you for this article and for letting us all know, we are NOT alone. The spoons analogy is great. I have a husband with post-meningitis brain damage. He, too, has to “count spoons” and we never know ahead of time what number of spoons he has to start with, nor how many spoons a given activity will cost. Today it may cost one spoon… but next week the same activity costs ten spoons. The uncertainty is part of the stress of this new life we have. Here’s a link to my blog post about our new, narrower life, with “fewer spoons”. Some of your readers might find it helpful as well. http://mypinkyfinger.blogspot.com/2013/03/after-effects.html

  • Wendi Patterson Burns

    Thank you I have RA, and many other things to go with it why list it all you get it. Now I can use this to explain God Bless you.

  • Pam_Smith

    I have post operative and post infection fatigue and I identify so much with this – like having to turn down the offer to go on holiday with family and friends because I knew I’d be so tired by the journey I’d need to rest for most of the week. I think some friends and family understand but unfortunately you meet this “Think positive” attitude from some people. Even a friend who had 3 months off work with post viral fatigue tells me I’m just giving in to it when I say “no” to things. 🙁

  • mullumbimbymagic

    Thank you. I have had Chronic Fatigue Syndrome for 10 years which has now been “upgraded” to a Lyme-like illness. Your words mean so much.

  • Madeleine

    Thank you for this. I have ME and it´s so hard to explain to people. Thank you.

  • Ena

    Very good article. People always ask me why I don’t work, and when I tell them I have Lupus, they respond back with,”but you don’t look sick.’ Some people just do not know and understand how life is living with Lupus. Not because we look good on the outside doesn’t mean that we are not feeling any pain, nor we have any energy left to do anything for the rest of the day. A big thank you to you for writing this.

  • Karen g

    I have lupus and fibromylagia I live with pain and fatigue every day my daughter and her step mother have it as well and they think it’s easy to cope with it everybody copes differantly than others and everybody suffers with differ ant levels you may have the same condition but every bodies condition is differ ant like people are differant

  • certs17

    PassingBy and Kelly Ryder,
    It’s true that many people with FMS have thyroid issues. But sometimes it is more than that…for some (like myself), FMS and lupus points to a genetic disorder. Check out MTHFR genetic mutation, a disorder that not many doctors even know about. As you all know, it can be very frustrating trying to figure out (and even explain to doctors!) such a barrage of “invisible” diseases.

    Best of luck to all of you.

  • Page Cole

    Awesome way to explain a lot of disabilitys ,,, thanks

  • den haugton

    Just recently diagnosed with Lupus. The whole thing is a shock to me and still struggling to come to terms with it. My life has turned upside down and those around me just don’t seem to understand 🙁 Daily, I put on a brave happy face but deep inside, I’m struggling. I hope my next post, will be more positive.

  • Guest

    Thank you for writing this….

  • Kyra Miller

    Christine, Congratulations on having this article that you wrote eleven years ago still be prevalent today for so many of us. I just reread it, because I’m sitting around sad today wondering why I don’t have any energy whatsoever, when yesterday I had enough energy sew for five hours. Thanks for reminding me I’m a normal Lupie Spoonie.

  • Robyn Parker Shields

    Thank you…I am new spoonie & learning to deal with my health issuses. Doctors are running test but nothing seems to help.the worst part is when EVERYONE around me doesn’t understand that I hurt.

  • PassingBy

    I don’t want to assume you don’t have competent doctors who have already thoroughly checked you out, but I’m piping up anyway, based on my own experiences with the medical community. Have you had your thyroid checked? Competently checked, including Reverse T3 and Thyroid Antibodies? An endocrinologist visit for a full HPT axis check could be revealing. Fibromyalgia is often a thyroid or adrenal issue. Thyroid problems can cause tremors as well as blood sugar control issues and headaches. A lot of the symptoms you describe are associated with untreated thyroid disease, as well as potential gut issues or protein allergies triggering hormonal reactions. Good luck to you.

  • Excellent posting. Thank you very much for sharing. http://al3abmix.weebly.com/

  • I wish I had words of wisdom. Some people just don’t want to hear or have empathy, it’s worse when they’re family. My Mum didn’t believe I’d actually done serous damage to my back till she saw the MRI. (Hug)

  • Kelly Ryder

    My daughter sent this to me because like you and so many people in the world I have lupus. But in the past few years I’ve found out that I also have fibromyalgia, chronic pain and fatigue syndrome’s, restless arms and legs syndrome’s, type two diabetes, migraines, familiar tremor’s…I could go on and on. I’m finding it hard every day because I’m staying sick. I live with my sister who can’t for the life of herself understand what is my problems every day. She makes fun of me, criticizes me, and thank God I finally am seeing a therapist. But I’m realizing that she’s just like alot of other people. Please don’t look upon others before u know what they are feeling because you might be like me and wake up one day and be an invalid yourself.

  • And I’ve learned something today. Thank you.http://jeux-game.com/

  • your = plural, not personal to you. i fear that much of modern illness comes from the poisoning of food, air, water… and thought.

  • Jan Sexton

    I’ve never been able to adequately convey to healthy people my disability, for which I still have no proper diagnosis but I suspect is POTS caused by Lyme. Especially since my condition doesn’t have a name attached to it yet, people tend to think I’m just lazy or putting them off. They can’t understand how real it actually is for me inside, because they can’t see it. I’ve told them that it takes more energy for me to do the same things they do, but that didn’t quite do the trick. They probably needed an analogy, I just couldn’t think of one. Maybe if I tell them this one, they will get it. Thank you so much for this gift. Words can’t express how grateful I am.

  • .. and you’d be wrong again. It’s okay. As long as you’re learning.

  • yes, it tells me that your ‘love’ is conditional.

  • werelupus

    thank you so much for this ..i have lupus myself and I was never able to explain to a normal person how I have to go about my day …..over worked myself yesterday ..paying for it today 🙁 … iwill def use the spoon theory lol

  • Actually – other than our interactions with you, we’ve been very positive and supportive. Maybe that should tell you something?

  • Seriously, the attitude here is so negative – not just you – that it is obvious that the body / bodies are communicating those very thoughts. And I have to admit that when I was low energy – and in constant pain – my thoughts were very unhappy thoughts. I’m sorry. I guess I should just be ok with people suffering… I rejected a lot of good advice too… and had to ‘reinvent the wheel’ – finally coming back to what people had told me LONG ago. 🙂 I guess it’s just the way it is on this planet – there’s a great deal of negative programming… overt and covert. I am grateful to be me, now. Thanks for making that clear. 🙂 I am SO happy to be free from the past.

  • Oh sweetie.

    Chronic low energy, absolutely, can be malnutrition. 100% agree with you there. But chronic pain issues are a whole different kettle of fish.

    Do you know how many times we hear ‘Have you tried yoga?’ ‘Have you eaten X’ ‘You need to exercise more’ or a thousand other variations? Do you know how many self-labelled experts pop up, pipe up, and then get huffy when we protest?

    Sure, a healthy immune system cures a lot of problems. I’ll give you that. It’d sure help when you have lymphona, AIDs, countless other things that.. oh.. wait, destroy the immune system. Hmm. I sense a problem with your logic.

    I don’t have to respond to your posts, it’s absolutely true, just like you don’t have to post here lecturing chronic sufferers about how you have magic answers. But don’t worry, I’m just trying to help and educate.. that makes it all okay, right?

  • your comment is clever, but if that’s how you read me, then you have read me wrong. i am not callous and i am not flippant. i do not understand your interest in addressing my comments at all. are you in the medical field? public relations? until you have good, positive contributions to make, please just ignore my posts… ok? anyone who does not like my posts can simply ignore them… why bother to be disrespectful? it only reflects back on you, not the object of your criticism.

    i earned my right to talk about it by coming back from a chronic LOW energy condition that persisted for years before i took charge of my own health – and i have also helped people suffering from cancer and other diseases recover their health. no one can do it for another; we can only choose for ourselves.

    the solution to all disease is health a strong immune system, and that is my area of expertise… not disease… health. when i was sick, i could have continued doing what i’d always done, but i’d by now be dead or still be living a very low energy life, which was not a very happy prospect. i was desperate to live and to live well, so i had to learn how to cleanse and nourish my body.

    it’s not rocket science, just simply cooperating with nature. part of our true nature is good will toward others – even those we disagree with. it is not the other who suffers when we hate… it is we who deprive ourselves of love. hating is like taking poison and expecting the other person to die.

  • Cherly, do you believe in vaccinations?

  • cheryl, this is really a good interview, if you can ‘hear’ british… it’s not everyone’s favorite accent… but it’s an excellent interview about boosting the immune system. http://youtu.be/Vj6GnHwt5GA

  • This is how you sound :

    “Hi, I’m sorry you have a multiple fracture in your leg. You should eat more celery and walk on it.”

    Hide the terms however you like for whatever disease you like, but your cluelessness is damaging. If you don’t know what you’re talking about — especially when it comes to chronic disease — DON’T TALK.

  • cheryl, i wish i knew more about lupus. it sounds like you have done a lot of things to help yourself. i am not clear on what lupus is… i guess the medical field isn’t all that clear, either… looking at things about it on the web. all i know to do about any disease is to create as healthy of a terrain as possible. in my life, the biggest jumps i made in health were first – when i became a vegetarian, second – when i began to eat LOTS of greens, and third – when i began eating as much of my food raw as possible. finally – when i began clearing my thoughts and letting go of anger, resentment, fear, sorrow, etc… that was a big leap forward too.

    our modern world is so very unnatural and dangerous – quite honestly, i am astonished we are still alive. there are so many assaults to our health. i am on a mailing list with people who are very sensitive to electromagnetic fields. that is another factor to consider in all diseases… apparently cell phone towers, and anything that makes sound, light or motion – all are generating EMFs. some of us have to be very careful how long we are exposed to those things… but then, it is a very unnatural world that has cell phone towers, wifi, electrical and electronic appliances, etc… but it helps health and peace – reduces pain and discomfort – to be away from such things. usually i try to minimize my exposure to EMFs, but the other day i went to a big electronics store. and yes, i ended up tripping and falling onto the floor… computer in hand. often i have wondered how many diseases are really driven by our unnatural environments and unnatural foods and the intensity of television and movies… but i guess we will never know unless the world flips into ‘natural’ mode all of a sudden. ?

    i hope you will regain your strength and health, cheryl. it sounds like you have peace of mind… that is a very important gift in life. best wishes to you, dear sister.

  • Ashley

    See, now we can see how full of resentment and hate you really are. Those positive thoughts are crap. You are just angry and self-righteous. Eat some gluten, maybe it’ll make you feel better.

  • Ashley

    Deer can also die from diseases and, you know, wolves. Cause they are also living, organic beings that can get sick and die. Things in nature die. They die and suffer from disease. Humans take care of each other so we tend to survive instead of being eaten when we are weaker. Kinda how medicine started in the first place.

    You need to wake up and realize you don’t live in Narnia.

  • Robin

    Not true, you also need to be on some stupid diet made up by people with too much money and not enough work to do. 😉

  • Garrett

    lol, you realize that people in the past had SHORTER lifespans than we do, right? They weren’t dying of cancer and heart disease because they were too busy dying from consumption and the flu. Get over yourself.

  • Garrett

    Yes, all cancers are exactly the same disease and were cured in the 1920s by some rando you found online. Of course. Why wouldn’t we believe such genius?

  • James

    I think she meant that they can do everything they want to without having to pick between one task or another. You can both clean your room AND eat dinner tonight. No need to choose. But not everyone has that luxury.

  • Skip Boney

    Thank you!

  • rosy mostafa
  • Clarabelle

    I have Fibromyalgia too – the spoon theory describes it well – I have tonsillitis at the moment 🙁 My daughter in law is a doctor and doesn’t have much sympathy, as she is very energetic and a “doer” so in her eyes I am just being “over dramatic” if I say I can’t do something…

  • One of the very hardest things I had to do was ditch the toxic friends. They drag you down and make EVERYTHING harder. Stress makes fibro way worse. You have to look after you, too.

    If they don’t want to understand, they never will.

  • Morgan

    I have fibromyalgia. Nobody asks me what it’s been like to have disabling fatigue, pain and diarrhea every day for the last ten years. I’ve been told to my face by long-time friends that I’m just lazy. I wish they understood that I want to do just as much as they do, but physically can’t.

  • Melissa

    I was told I have lupus, but I have yet to get a formal diagnosis. I have been struggling with the concept. This made me feel a little better, somehow.

  • jhk

    I have a very rare metastatic cancer that started in my adrenal gland, called Pheochromocytoma… since the initial diagnosis, I have had numerous other surgeries to remove the other tumors. I have lost my spleen, my adrenal gland, parts of my pancreas, liver and all of my reproductive organs… as well as brain surgery. My days are always a chore. Just staying awake takes a number of spoons. Thank you so very much for this explanation! It is the best explanation I have seen to date!

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