Absolutely!! Understanding and acknowledging what is going to be too much for me has definitely been a learning experience. I am just now hearing about the spoon theory, and I’m wondering if I knew exactly how many spoons I had each day, and how much different activities cost me, if it would be easier for me to keep track. I guess it is time for me to start watching those things more closely and see if I can figure that out.

I use this article often to show to friends what I go through every day.

I would say social situations take 2-3 times as many spoons for me than for an extrovert. If I’m already at a disadvantage because of lack of sleep or
a headache then I’m prone to sensory overload making it even worse.

Excellent article! You have found a great way to demonstrate the extreme and disheartening difficulties we face every single day doing the most mundane of things! You also are so fortunate to have such a good best friend. My similar attempts at explaining my chronic invisible illness(es) to my best friend were not received with such empathy and care. Instead, my (now former) ‘best friend’ tried to reply to me that she has similar problems too and that “my problems should not be considered more important than hers because everyone has their own crap to deal with”. And the “similar problems” she was referring to- the crap that she deals with- is normal crap! Things that EVERYONE has to deal with, including me. And to add onto that, I would actually be happy if the crap she was listing as her “similar problems” was what I had to call my problems. If my worries and problems centered around losing that last 10 lbs. or being sad because my boyfriend was jerky to me that day, etc…. I would be so happy to take on those “problems” if I even could. Those are normal life events and I would feel like a real person again if those types of things were my biggest problems…..I don’t get to be normal and care about dieting or that new outfit or dating- because guess what? I am never well enough to go out or date anyway, so I don’t worry about how I look. That is the least of my problems, I don’t even care anymore I just want to feel ok and live without pain and sickness.

My point is- your best friend sounds like a true friend. I really wish I had that ( and I probably really need it now more than ever) but I don’t. It hasn’t bothered me a lot about most of my friends because I understand that it is hard for others to understand what I am going through and also that they all have their own lives going on. But when it came to my two closest best friends in the whole world- girls I have been best friends with since I was a child- it hurt really bad realizing that they didn’t care or understand. Because it wasn’t just that they did not understand, it was that they never even acted like they wanted to. In your story, at least your friend took the time to ask you that serious question, asking what it was like to be you and live with lupus. To me, that shows that she truly cares about you and was striving to understand because she was empathizing with you.

Neither of my two (former) best friends ever did this. These two girls I am talking about are not friends with each other nor do they talk to each other ever, so it wasn’t a case of group mentality. Yet for whatever reason, they both ended up treating me the same way- as if I was over-exaggerating my illnesses and symptoms, and that I could feel better if I wanted to, I was just selfish and overdramatized my problems.

The one friend treated me as if I was psychosomatically creating my problems and that if I just came out of the house and went to her social activities I would instantly feel better. She would in turn get mad at me every time I did not (of course) go out when I was sick, and then she would talk to me as if she knew better than I did what I could and could not do. She acted like she knew about my diagnoses and believed in them, but that regardless of that, I should still be able to come to her house when she wanted me to. If I would attempt to tell her why it was a bad idea, she would always offer up some ridiculous “solution” and then when I didn’t go for it, she treated me like I just had a bad attitude and wasn’t even trying to feel better.

Then eventually she started pulling power plays against me, purposely not being available or willing to come meet up with me or come see me when I was feeling well enough to actually socialize. It was like her way of getting back at me for when I was unable to hang out when she wanted to on her terms.

The other friend would listen and pretend to care and sympathize with me, she never made me feel guilty or bad about my illnesses when we were talking or when we did get to hang out in person. However, it always bothered me that though she acted like she cared and felt bad for me with my plethora of health problems, when it came down to it she never once came to see me at my home or when I was in the hospital for extended stays. I let it go because she was my last close friend and at least I had someone to talk to still on the phone and I still enjoyed hanging out with her on the rare occasions I was well enough to do so. But then, I took a turn for the worse this summer and learned the hard way that this friend never cared as much as I thought she did either.

I could have forgiven the fact that she didn’t call or come see me in 3 months while I was in and out of the hospital and went through 3 major surgeries on my leg in a row (unrelated to my chronic illness, but I was also in a bad car accident with major disabling injuries to add onto my already sick body). It hurt my feelings that she didn’t take the time to do one thing, anything at all, even send a card or text- but at the same time I tried to move past the hurt when I was starting to walk and be mobile again because I craved companionship so badly and she was literally the only friend I had left nearby anymore. ( my hometown, I had to move back in with my parents at age 28 because of my health) It still hurt but I did not want to dwell on it or be angry at her. I did, however, want to be honest with her and express my feelings to her.

When I did, that was the end of our friendship. Apparently I should have tried being honest and forward much sooner. I might have saved myself wasted time on a one-way friendship. When I told her how hard this summer was for me dealing with my two worsening diseases and then the disabling trauma left over from the recent near death car accident, and I told her how alone and isolated and hopeless I felt- before I even mentioned anything about Sarah personally- she immediately jumped in defensively telling me why she didn’t call or stop in all summer. She lied a little bit and exaggerated things, trying to validate herself I guess. I didn’t want to press it further because my intentions were not to make her feel bad or feel guilty, I just wanted her to know how I felt. In my mind, if the positions were switched I would want my friend to tell me these important things, so that if I did not act or react appropriately, I could have the opportunity to apologize and learn and do better next time.

When Sarah was clearly acting so defensively about why she did not reach out to me at all during that time, it was obvious that she just was coming up with excuses to save herself from any blame or anger from me. I tried to save her the embarrassment by quickly letting her know I wasn’t mad and that it’s ok…but she continued to try to lie to me. If she would have just said something like, “I didn’t know it meant that much to you” or “I’m so sorry I just got busy with the kids all the time, something always came up” I could have easily accepted these half ass excuses and we could have went on just fine. Because I more than anyone else try to not put unrealistic expectations on my loved ones because of my health issues. Though I still would have been annoyed that she didn’t try harder, I would have definitely understood and still viewed her in the same light as my best friend.

Instead, though, she did not apologize or offer any remorse at all. Instead, she decided to take the argumentative approach, angry at me for calling her out on her shitty friendship ways. At one point during her selfish rant, she told me that her husband doesn’t even think my injuries or my sicknesses are as serious as I make them out to be, and that she would always stick up for me, but that now at this point she was mad because she has problems too and my problems should not be more important than hers. She tried to skew everything to make me into the selfish friend. She went on and on about how I am selfish because the last few times we have seen each other I monopolize the conversation “venting about my problems”. This hurt and upset me because I did not look at the last two times we hung out as that at all. I never thought I vented anything. I was just updating Sarah on my life and what had been happening with me medically since we hadn’t talked in so long. I couldn’t believe that Sarah had looked at it as “doing me a favor by listening to me vent all night”.
That pissed me off because I didn’t even want to come to her house that night. I was still suffering, just a little less severe that particular day. It would have always been MUCH easier for her to come see me or come to me to hang out. But since that never happened and like I said I try to be forgiving of my friends’ not understanding me, and how I longed for companionship but had been bed ridden for quite a few months- I made it to her house one night when she invited me over to drink with her. I told her I did not want to drink for fear of exacerbating any of my health problems, and it was obvious she hated that answer. It was already kindof annoying and insulting to me that she was asking me over to drink, when I had called to try to get her to come watch a movie with me or something else low key, just to see her. In my mind I was like, wtf what don’t you get about serious surgery a week ago!? However I even ended up having a drink and sipping on it all night just to appease her so she didn’t have to drink alone and so that I could act or seem more normal like the old me.
So when she later talked about that night to me as if she was specifically doing me a favor because she “knew I needed to vent that night”, and was trying to use this as evidence of why I am the selfish friend because she already put up with my venting that night- I just realized she is not a friend at all. All she ever cared about (in recent years at least) was having a fun person to entertain her while she drinks. When I was literally immobilized for two months, that is when she did not call or text at all. Why? I now know because I was unavailable to suit her needs at that time- I was unavailable to party. And why did she get mad at me and so defensive when I called her out on her ways? Because she is selfish and did not like being told that she is wrong in some way. She would rather stay in denial and believe that I am the selfish one who “milks my illnesses and surgeries for attention”, than come to terms with the truth which is that she has been acting selfishly, and has not been the good friend that she claims to be.

This reaction kindof boggles me because I don’t get what her goal is here. She obviously lost a friend. But then again, it looks like she didn’t really care much about me anyway, so maybe that’s just it. Maybe her reaction just showed how little she cared in the first place. It’s just surprising because she called me her best friend (not just to me but to everyone) and in my mind, I thought we were very close good friends. I would have never treated her this way if she was going through the same things. I just do not get it.

Same thing to be said about the first best friend I mentioned above. I don’t understand how someone I loved and trusted and considered my best friend- could have all along not cared as much about me as I did for them and as I thought they did for me. It’s heartbreaking but also a little scary. Like how could I have really thought these two people were my best friends for SO long if they really didn’t care about me like that? Am I super naive or just unloveable? I see other people that have the best friends like I thought I had. So are those people all faking too and when life gets tough, they will likely bail also? Or did I just get really unlucky with my choice of lifelong best friends and this is a rare occurrence? It bothers me a lot. I wish I had better insight on how this can happen to a best friend relationship. I understand how many friends will fall off once someone becomes chronically ill, but most the time it seems people can still rely on their family and closest friends to be there for them (at least emotionally). Nope, mine abandoned me. Why?

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Hi there, I recently found out I have Polycystic Ovarian Syndrome and I didn’t realize there was a connection to being a spoonie. I relate to the spoon theory due to my chronic depression, but I want to know how PCOS might play a role in my feelings of tiredness. I know the basics of PCOS, but what would you suggest for someone recently diagnosed? I want to know what this means and how it affects my daily life. Any insight would be greatly appreciated.

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I also was directed to your blog by another Blogger (Jo) and can I say I am almost in tears because you came up with a way to have others relate to what you go through every single day. I have Ehlers-Danlos syndrome type 3-the hypermobility type. There are several types but mine is the most common even if this genetic issue is rare (although may not be as rare as dr’s previously thought). The most severe cases are the ones you would see in the circus-elastic man (stretching the skin) or the man who can fit into a tiny box. The problem is I do not produce collagen so my joints are very flexible and I can easily dislocate. I have poor teeth,IBS, hypoglycemia and severe pain. Somehow they can be all related from the years of reading about this. There are no books in the library about Ehlers-Danlos and some doctors have no clue what it is about. I have given myself severe whiplash (backing out of a driveway), dislocated my shoulders, my hip, sprained fingers, ankles etc… The last time I had to wear a “boot” for 6 weeks due to a severe sprain and I pulled my muscles in my arm when dressing. I had such a hard time moving that arm for 5 months. I take longer to heal because any movement creates scar tissue. I have also suffered lock jaw a few times after seeing the dentist because of the jaw joint. I am often exhausted and I can’t walk like I used to. The pain is increasing and severe but I don’t swell so I have received looks from many people and doctors have been brutal from asking me if my relatives were ever in a circus to saying I am just depressed. What you wrote here is so very true. I need 2 hours before work to just be able to get out of bed, rest my joints to be able to move a little better after taking pain meds. I have to be very conscious how I dress or I can dislocate or sprain myself from moving too far. I can’t do 3 things in one day but usually only one and I always pay for it at the end. So I hear you even though I don’t have lupus. I may use your way of explaining my issue in the future.

My father, who worked as a crane operator in the oil fields in the 1980s, was struck with GBS when I was 5. He was a strong burly man that suddenly
couldn’t even pick up a coffee mug. I remember that to me it was a game to “help daddy” get better by arm wrestling with him (I thought he was letting me win). I hope you continue to recover. My thoughts and prayers are with you.

Did you read the article?

Hi, May I know why is it called the spoon theory? why spoon?

Would love to share on FB, is that ok???

Happy to hear self-harm is not in the picture. This blog does not allow for PM. After decades as a chaplain some sharings push the “might need follow up above my pay grade” button.

Christine, thank you for sharing “The Spoon Theory” It’s a compelling, and a very unique way, of trying to explain to those, who don’t know, or can’t see, or feel, what’s going on inside of you, and who don’t understand why you can no longer do many of the things you could do before you became ill. Because, no, I don’t look sick on the outside! These well meaning people tell you, “You look great after what you went through!” No, they don’t really know what I went through,,,,,, or “I’m so glad you came through this horrible illness” Yes, I did, but my life has been turned upside down, as a result of it. I was a healthy, energetic, and very active, 54 yr. old woman, until I was stricken with Guillain Barre” Syndrome”, or “GBS”, 6 yrs. ago. “GBS” is a, sometimes life threatening, autoimmune disorder, in which your body attacks your nervous system, causing nerve damage, and in most cases, paralysis. My case of GBS was acute, very severe, and within a week after the first flu shot of my life, I was completely paralyzed, and intubated, for 3 mos. My family was with me every step of the way, sitting by my bedside, or sleeping at the hospital, so they saw me, at my very worst; not knowing if I would survive, or not. And, as my Father says, “No one will EVER know what you went through!” So, they do understand the life long, Chronic pain, and Chronic Fatigue, that plague me every single day, and how it has tremendously altered my life. They never get upset if I have to cancel short trips, at the last minute, or am unable to attend family functions. So, I try NOT to make plans! A couple of yrs. after becoming ill, a good friend of mine shared “The Spoon Theory” with me, and I burst into tears! Finally!!! As far as others go, and only if they ask, I’ve explained about, and have even shown them, the spoons, and how they help me cope and plan my days. Some “get it”, and some don’t. You can see it on their faces, when something is taken away from them, and it finally hits home! Or, in some cases, I can see their eyes begin to glaze over, so I just change the subject. I don’t whine about it, or talk about it, unless asked, and the very last thing I want is pity. This is my “new” life, and I deal with it the best I can. Last, and most importantly, “The Spoon Theory” has helped me better understand myself, accept my limitations, and it alleviates any guilt, I might experience, about being merely “lazy” I do the best I can and let the rest go for another day, when I have the “spoons” to carry out tasks that can wait. Although, I carry these residuals with me, I’m still a Guillain Barre’ Syndrome Survivor! So Christine, I want to thank you, once again, for sharing your story with me!

I’m an 18 year old male. I feel healthy, and I try to maintain a healthy lifestyle. I can honestly say I cannot relate. This essay helps me be thankful for what I have, it even inspires me to do more for others who struggle. Ive seen family members and friends struggle with things similar, this peace of writing truly helps me to understand to the best of my ability what they go through, I believe more people should read this.

Have you considered talking with a professional therapist? The last thing most of us want is one more appointment to keep, but sometimes it is necessary, especially when thoughts of self-harm arise.

Seriously! I’m 49 and was born with severe asthma and allergies (as well as some other conditions that have had negative effects on my entire life but we’re not even diagnosed or SUSPECTED until last year.
I am one of the happiest, most cheerful, and optimistic people I know. I am strong willed, stubborn, and persistent. People have told me throughout my life that I am the (emotionally) strongest person they’ve ever known. I had family (parents, grandparents, aunts, uncles) that were FANTASTIC role models for being strong, self sufficient, independent, and overcoming limitations/obstacles (people who lived through/grew up during the Depression are pretty tough that way). I’ve fought my conditions (both known and unknown) my ENTIRE life and have never wanted ANYTHING more than I’ve wanted to be healthy. I fought those who told me I “can’t” or “couldn’t” due to my illness (as well as those who told me I was putting on or faking when I was clearly struggling to breathe right in front of them.) I fought to have as normal a life I could and do as much as humanly possible. From my earliest days I imagined myself as strong, healthy, and capable of ANYTHING. If, as Ellie Smith claims, “you can get physical changes imagining being healthy” then by now I should be a veritable powerhouse of shining good health, and a rich, successful Olympic gold medalist to boot.
But the reality is that despite all my positive thinking, I’m still sick with my chronic illnesses. Some are worse. New ones have emerged. Then there’s the pesky issue of not having a clue about my ADHD, dyspraxia, and sensory processing disorder (well, I knew I was an oddball from a very early age, and that it was “just how I was made”, but beyond that- nada) yet I still struggled with the symptoms and negative consequences all the time, as far back as I can remember. Symptoms I couldn’t “fixate on” or “give in to” because I didn’t KNOW they were symptoms, and wasn’t even aware of anything they could be symptoms OF (ADHD was under diagnosed in the 70s-80s, especially the innatentive type, especially in girls; I hadn’t even HEARD of dyspraxia or SPD til a 1.5 years ago. And my jaw dropped when I started researching these disorders and saw that lists of symptoms described my every idiosyncrasy PERFECTLY.) That didn’t stop me from being limited or disabled by those disorders, no matter how hard I pushed against them.

Unfortunately hiding from truths will not make them go away. Facing them at least allows the possibility of dealing with them. Even a long distance relationship can be life sustaining.

Then again, having known each other 40+years, you are both likely facing the realities of aging and the fact that there are good days and bad days. Rejoice in the good days knowing that they may decrease in frequency.

My friend envisions and dreams of holding her child daily yet her arms still do not move. She will never cease to imagine that. I wouldn’t call her bound by fear but by disabilty.

After working in construction all my life, I was hit with GBS 5 years ago. I went into the hospital at a strapping 225lbs on a very healthy 5’10” frame at 48 years old. When I left two months later, I weighed an emaciated 151lbs and looked like I was a little boy walking around in his fathers clothes. It took me 7 months just to learn how to walk again. I know the spoon theory very well and live with it every single day that God allows me to wake up. Good story, I hope its read by those who need it and by those who need to learn it about others as well.

Thank you so much for creating the spoon theory. It helped me understand my own limitations. Like understanding that I only have so many spoons helps me feel a little less guilty about not attending a friends birthday tonight when I said I would. It helps me understand that it’s up to me to choose my spoons wisely which I may not have been doing up until now. Like I only get to do so many things in a week or in a day. If I do too many things or over exert myself it really does take days to recover. This spoon theory makes it so much easier for me to see how often I borrow spoons from tomorrow and the next day so I can do whatever I want for a few days. Thank you so much. Unde standing my choices is so much clearer now and I’ll get to share this with family and friends. ❤️❤️❤️

Thank You Christine Miserandino for writing this. When I was still working I had a boss that use to think so many people faked there back strains etc. Him knowing I had slipped disks in my neck, came to me and explained how he turned the wrong way and bam his back was on fire. He changed his tune after that and in a way was trying to ask me how I dealt with working while in pain all the time. I wish I had this analogy at that time to explain to him how it worked. How just waking up wrong could make all the difference. Not working ergonomically correct could set off a chain reaction. A bad day or night with the family of husband could set off the migraine to accompany the neck pain. The silent depression that comes from it all. I could go on but you already said it so well. There are so many types of silent pain, being physical or mental that this apply’s to.

If I am feeling well I try to use as many spoons as possible because I never know how many I will get tomorrow. I’m learning something about this though: I may be well enough to use all my spoons but doing so actually means I will have fewer the next day and the next and the next for who knows how long until I feel well again. I’ve decided to try to be ok without tackling all just because I can in the moment and see if I meter out my spoons and just be ok being ok without all the expectations on top to be useful and productive perhaps I can spread them out a little bit further.

Someone shared this on FB and I read it because I was curious. It was so beautifully written, so heartfelt and compelling. It gave me a voice. I’m 59 and 2 yrs ago, while I was riding my bike home from work…I was hit by a Sebring in the crosswalk. Since then, I’ve fallen twice, had a DVT (bloodclot), fractured my knee, been in the hospital multiple times, been in physical rehab for 3 mos, been in outpatient therapy, and fractured my arm at the shoulder where I couldn’t wear a sling or have a cast put on. I lost my full time job and haven’t been able to work outside the home. I still used my cane because I’m afraid I could fall again. I had an EEG done and they found nerve damage from my toes to my ankle, up my calf to my knee. I live in pain every day and now it’s even in my lower back. Sleep…I don’t know what that’s like anymore. The diagnosis is called CRPS or complex regional pain syndrome. It could get worse, it could go away, it could last the rest of my life. But I’m a fighter and I get out and walk, carrying my groceries in a backpack as I don’t have a car. Good people ask me why I’m still using my cane. I too feel like people don’t understand. And I don’t expect them too but it would be helpful if they understood what you so eloquently conveyed. That everyday I make choices and decisions that I don’t really want to be making all the time. But it’s my life now and I miss out on a lot. I feel like people think that I should be over this by now and that maybe I’m milking it for attention. I would never do that and I wish I could get over this. I work hard every day to keep positive and to be active with my art. It is what gives me passion and the strength to keep on going. Thank you for the spoon story. It means a lot to me. It would make a great kids book.