what do spoons have to do with disability and chronic illness?
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- čas přidán 3. 07. 2024
- In the first year after my stoma surgery I learned a LOT about disability and chronic illness communities, cultures, and advocacy, and spoon theory especially is now just an everyday part of my life. But what IS spoon theory? Why is it useful? Who is it for? Let's chat about it! ✨ Thanks to Convatec for sponsoring this video! Check them out & get your free samples here: www.convatec.com/en-gb/stoma-...
Convatec: www.convatec.com/en-gb/stoma-...
Spoon theory by Christine Miserandino: butyoudontlooksick.com/articl...
Moog: / moogflorin
CHAPTERS
00:00 - Intro
01:10 - What is spoon theory?
01:35 - Who invented spoon theory?
05:02 - How do you use a spoon (theory)?
08:19 - Moog’s average day of spoons
12:22 - Why is spoon theory important?
14:50 - Who is spoon theory for?
17:23 - Outro
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I don't mind creators being sponsored by the same companies no matter their main topic but I *love* it when creators get sponsored by a special company that fits well to their brand. Congratulations Hannah and Convatec! 💛💜
Another analogy I really love is the Phone Battery Analogy - one day you may wake up to learn that you haven't plugged in your phone overnight, so you'll have to function all day with just 20% battery. Naturally you'll need to prioritise the essentials/the things out of your control - getting the kids ready for school, doing the project you've committed to at work etc. You'll have used up all your battery by midday! I've found that I can occasionally "recharge" my battery throughout the day - meditation/a nap work well for me. I'm also able to "supercharge" my battery, and essentially use more power than I have, though this comes at the cost of my battery for the next days/week. The problem with chronic illness is that this is an almost daily occurrence, so you'll almost never have enough battery to do all the things that aren't "essential" - physical health, proper eating, hygiene, socialisation etc. can quickly go out the window, beginning a bad cycle that you can't get out of. Big hugs to you for covering this topic, and to all my fellow spoonies
This makes so much more sense to me than the spoons
Same, I literally have a battery in the red tattooed on my arm! xD i'm a very outdated piece of tech and you will be lucky if i manage to hold a charge for more than 3 hours
This is the ine I use as it fits better, and I find more people understand it when I use it to explain. I did start with the spoon theory, though, and it was fine for the most part, but the battery analogy just seems to be easier and more understandable for most. Just my own observation on this of course xx
I genuinely burst into tears part way through this video. Never have I felt more seen as a spoonie. You described it so eloquently, as did Moog. I've often struggled to explain spoon theory in the detail you have, so you best believe this is being sent to all my friends and family! I've lost so many friends due to being "flaky"; it seems so difficult for able people to understand that I only have a certain amount of spoons daily.
I have four days in a row where I need to leave the house next week, and the worry that I'll crash is crippling. It's terrifying having to live this way. But the spoonie community is amazing and has helped me for so many years now.
spoon theory × adhd (for me) is like spoon roulette, sometimes i get a surprise extra 5 spoons from an activity, and sometimes something that usually takes 1 spoon takes 10. varying energy levels are one of my biggest struggles, especially communicating it to others, and having lacking executive function doesn't help with trying to manage it 😅
Yes! That ! ❤
I am autistic and have used spoon theory a bit. For me, it's much more the mental load that decreases my spoons, as well as masking in a society not built for a brain like mine, so I can sometimes recover spoons throughout the day by resting, stimming, or just having alone time. I can definitely tell when I have no spoons left, or am low on spoons, and spoon theory helps me communicate this with others, as apposed to just saying "I'm tired".
yes! I'm also autistic and I've also had debilitating chronic fatigue although thankfully I've gotten my sleep disorder diagnosed and properly treated now. but socializing (mostly the masking part- for me it's the inauthenticity and sense of acting that is so incredibly draining) is mentally, emotionally, and physically exhausting. my eyes get extremely dry and it becomes harder and harder to keep them open even if I don't feel sleepy. I think its from extended eye contact, if thats possible. it becomes hard to do anything since i can't focus mentally or visually and i have no more executive function. and I just feel so incredibly drained and idk, destroyed. after long enough if I can't escape I will have a full on meltdown afterwards with self harm, screaming, crying, or a shutdown where I can't talk/move/focus my eyes and I fully dissociate. I've been using a version of spoon theory to explain it since before I had ever heard of spoon theory. I had like a "jelly bean" theory in high school hahaha
My experience of spoon theory with autism is "juggling spoons".
I have about four kinds of spoons: "executive spoons" for starting major tasks; ""social spoons" for being around people; "mental spoons" for figuring things out and having patience; and "creative spoons" for making things (including food). Most things I do use one kind of spoon, but give me another kind of spoon - board game night, for example, consumes social spoons but gives me mental spoons. The practice of specifically choosing actions that use up the spoons that I have plenty of AND that restore the spoons I am shortest in has been a useful practice, especially post-COVID.
Yes! I’m also autistic and I have PCOS, and saying “I’m tired” or “I’m overstimulated” just seem to mean nothing to average people.
Jessica Kellgren-Fozard made a great video about spoons a few years ago. She used the Sims to emulate an average day and then added a count of spoons in the corner. It was a good visual for how spoons ebb and flow throughout the day.
It's also interesting how if two people are doing the exact same activity, one can gain spoons and the other can lose them. For example, some people gain spoons from having a shower or cooking their favourite meal, but for someone who say has a chronic illness they may lose spoons because of the extra effort that's required for them to do the tasks.
This could also be applied to extroverts and introverts. A neurotypical extrovert will likely gain spoons from a social event (or maybe if it's a long event they might be a bit tired by the end and lose a spoon or two). Whereas, an introvert or masking neurodiverse person has to put more effort into the social interactions (even if they enjoyed it), so will need some time to recharge their spoons afterwards - maybe they've even had to borrow some spoons from the next day for the event.
The biopsychosocial model does so well explaining the interaction between "is it your condition depleting your spoons or is it the expectations you be able bodied."
The idea is that your condition affects you in three ways: biologically/medically, psychologically, and socially.
Biologically/medically, you can have a bad pain day which will increase the number of spoons everything takes and decrease your total amount of spoons or you could have a bad GI day where you can't eat or you can have had bad sleep or just have a lot of fatigue that day... It's the physical limitations that exist in your biological metrics which impact spoons.
Psychologically, your mood, your outlook, your anxiety, your hope or despair... The mental things that impact your spoons. Your attention can be a part of this... It's how you think and feel about your disability, yourself, your tasks, your spoons. All of that impacts how many spoons you have and how many spoons things cost.
Socially, this is the expectation that you do xyz. If the social expectation in your house is that you do the dishes and you know that's unwavering, but you also know that you don't have spoons for the dishes, doing the dishes is going to deplete more spoons. Just the knowledge of the disconnect depletes spoons. If you push yourself to fit the abled expectations, you're going to run into a deficit. If you don't push yourself, you'll have to deal with social fallout of that, which is going to run you into a deficit because that takes spoons.
But also the social part of this can be your interactions with others and your social life which can feed your psychology which is fed by your body. These three systems work together and feed each other simultaneously to create the functional limitations of your condition. Which is what we're talking about when we talk about spoons. Super interesting and honestly, I LOVE the biopsychosocial model cause it frames things so well!
I found it useful for examining my routines and where I can do better to save spoons. For example, I love my cat, but the spoons required to get up and feed him when he is hungry (and avoid total bookcase destruction in his attempt to gain my attention) are costly, and even just trying to remember if I have fed him costs spoons, so I invested in an automatic feeder that has a phone app listing each feed and the schedule for the next feeds. It’s saved me so many spoons I didn’t initially realise I was spending. Now I have a bit more energy to spend actually playing with and cuddling him instead.
I used to count spoons in the most intense phase of depression-burnout. I had to cognitively limit my spoon use so that I wouldn't over-do it the minute I felt a tiniest bit less shitty. What I found particularly hard was that in that phase the amount of spoons I had was very unpredictable, fluctuated a lot from day to day and I could just run out in the middle of the day with seemingly no warning. In both scenarios the spoon theory was an enormously useful mental and verbal shortcut to conceptualise the situation to myself as well as others.
As a person with IBS and depression, I often struggle with feeling like I'm being lazy or flaky because I feel like I don't have a valid reason (like those two things are so common and invisible, I guess they don't feel like a true disability or chronic illness), but this video was such a helpful reminder that I am a spoonie. I have come across this before, but yesterday I had a day where I was just exhausted for seemingly no reason and really berated myself for not being 'productive' enough. But this is just a reminder that, for whatever reason, I woke up with fewer spoons yesterday and that's okay. I do have some days where I feel more 'normal' and have that cache of emergency spoons to draw from and some days I really don't and I need to remember the spoon theory then!
Hi! I have the same conditions as you and I wanted to say that I absolutely understand and that this made me feel so seen! Thanks a lot for sharing 💜
@@elenagarciabroock2356 Aww bless you
Absolutly! Depression and adhd here! I never considered my self chronically ill (even though my medical insurance does).
I should recognize myself as a spoony and don't be that harsh on me. ❤
As a pregnant person, I really feel like spoon theory can be helpful. Cause like... Maybe at one point in my life I had replenish-able spoons, but that ability is gone now, and my baseline of spoons is soooooo much less than it normally would be. I feel like this could really help someone whose pregnancies have been like mine, cause i know I have struggled so much with feeling like a failure because I have so much less energy for physical or emotional labor. and the things that used to "replenish" a spoon like playing a board game with my husband or seeing a close friend now cost a spoon.
I totally relate to this!
Had to become a morning shower person during pregnancy because otherwise I'd run out of spoons by the end of the day for an evening shower.
Spoon theory is so important to me as a disabled person. Thank you for talking about this!
As someone with a chronic illness and a background in literature, I’ve always kind of struggled with spoons as a metaphor. I resonate with the general idea of having limited resources that deplete with activity, but spoons…are a pretty random choice for it? But this seems to be what we (the disabled community) have adopted as a common language, and I do appreciate that it’s out there for people whose resources might be less limited to help them understand.
It’s gotten worse since I’m also dealing with long covid now. Some days I call flat tire days-maybe I overdid it yesterday, and today I have a flat tire. I theoretically could drive on a flat tire, but it would do a lot of very expensive damage.
I was thinking spoons aren't really a great example as everyone will run out of time/energy eventually. I like your flat tire analogy.
Hope your long Covid gets better!
Love that a lot of people will stumble across ME/CFS through this video - thanks Hannah!💙
I think this is so important for everyone to learn about because anyone can be affected by illness or disability at any point in their lives. Even when I have a cold or I’m on my period I know that I have fewer spoons than normal. My mum has under active thyroid so has to nap every afternoon, she never schedules anything for the afternoon because she has really strong fatigue. But even close family don’t understand how bad it is and still want to pop round or ask her to babysit for example and I think them understanding the spoon theory would help them to respect her needs to rest
Yes! So useful to better take care of ourselves when our bodies (or minds) need more rest.
Sorry to hear about your mom. Must be tough having to always explain/ justify herself on top of dealing with the fatigue itself. But good on her for knowing and respecting her needs. Hope people become more accommodating over time.
I do find it interesting you mentioned it could be used for neurodivergents. As someone who is on the waiting list for an ADHD assessment, it definitely resonates, maybe not so much in terms of physical health, but mental workload & like having to force yourself to try and focus & really only have a limited capacity to do that for some activities. I tend to just absolutely crash at the end of the day as I don't think I've developed the ability to know how to not spend all my energy & mental focus & leave any for doing relaxing things, and sometimes household chores or basic self care like showering.
yeah i was going to say this - more so before being medicated but even so now, i feel like i can easily be hyper active and do too much then crash and burn out! i think spoon theory could help me avoid burning out as well
@@morganb4993 yeah it really frustrates me when I can't do yoga in the evening which I like to do for my physical/mental health cos I've just not planned for feeling an absolute zombie later in the day! Need to learn to pace myself haha
I think it's hard cos capitalism does expect neurodivergents to be productive & the hyperactive side of me absolutely can do that (only so much though) & is the side I am praised for, but when you're also fighting with some messed up attention deficit which is not praised for, it's easy to see how burnout happens
Good luck with your assessment and journey! My partner and I (both ADHD) use spoon theory to communicate our "mental/concentration reserves" so I know what you mean. If we both finish work for the day with no spoons left then its an eat from the freezer and don't worry about the washing up night. I am still learning to prioritise my spoons so that I can have some left to enjoy my hobbies on a more regular basis, but one thing I know is that things require less spoons in the morning for me so I shower and do my skin care when I get up rather than risk not having the spoons to do it before bed in the evening.
@@strawycape9693 thank you so much! My partner has autism so I think his experiences as a neurodivergent in a neurotypical world helps him understand me too, and there's many situations where we pick up each others slack if something seems to use up one's neurodivergence energy more than the others! It's lovely to hear others experiences 💛
The last segment about who spoon theory is for perfectly demonstrates the way dis/ability is such a spectrum. Every person has the potential to become a 'spoon', whether it's long-term, like a chronic illness or aging, or temporary like being pregnant, having young children, breaking a bone etc. It is a dynamic spectrum, and never static and everyone would benefit from society becoming accessible!
This video is incredible. I have fibromyalgia and have started a new job, it’s been emotional as highlighted just how much this condition impacts my life. Looking healthy on the outside is so hard, this is fantastic. The editing, the information, Hannah you are just wonderful ❤ Thank you!
The same day I accidentally drained my spoons on a very important day and had to explain spoon theory to my colleagues - I sit down to rest and find this video. I cannot thank you enough for this, I will share this video around for sure ❤
I got diagnosed with fibromyalgia a week a go today. I’m currently laying very very still in bed as I’m in so much pain after getting dressed over 13 hours a go. I never really got the spoon theory but you’ve explained it so well that I do now and I’ll definitely be adopting it into more common language
Hannah this couldn’t have come at a better time!! I’m currently in hospital recovering from colectomy surgery (my UC treatments stopped working after 13 years) All of your stoma related videos have helped me so so much to prepare for surgery and are helping now that I too have an ileostomy! So cool to see you sponsored by convatec and to learn more about the different products available! 💜
Thanks for educating people about the spoon theory. I have MS which can drain my spoons just from the illness itself but I rarely get an opportunity to explain spoon theory to anyone, luckily my friends are super respectful about my boundaries.
Thank you Hannah for sharing this!! I have ME/CFS too and it´s really great when the illness gets talked about so that more people know it in the future!
It`s also great to see how your assistant is working with the illness. Gives me hope! ;)
Great explanation! I'd only say this: no one has unlimited energy, and very few working people with the ability to 'replenish' effectively have the privilege of being able to avail themselves of opportunities to do so during their working day. Speaking as a union worker in a physically demanding job: productivity culture is bad for everyone.
Fellow spoonie here, I was also introduced to Spoon Theory when I got my chronic illnesses diagnosis of Narcolepsy
Thank you for discussing this! I myself have chronic health issues, and these discussions are important.
I've never been so interested in a sponsorship in a CZcams video. Most of the time I skip them completely but this one was actually interesting!
I first heard about spoons about about 5 years ago from a young friend with rheumatoid arthritis. It helped me get a better idea about her daily life and how hard some things I take for granted could be. Thanks for covering this hannah!
As a fellow spoonie I think one of the most important pieces of spoon theory is trusting people who are chronically ill or disabled that they genuinely do not have the spoons or energy to do something and it's not a "lazy" issue. I think unfortunately that is one of the biggest barriers especially since I fight with internalized ableism so I understand that if you're not in a diabled body then you might comprehend even less.
Also internalized ableism;
Sometimes I don't even know if I have spoons left or if I'm just lazy or not trying enough ..
It's really hard because there is no way to measure or reference my experience. "Is today a day where I can just work through depression (in a good way) or am I burnt out tomorrow for trying?"
I find this theory interesting when looking at my introversion (maybe it's a form of social anxiety?). On some days, I can have many different kinds of social interactions without feeling drained (a day with many spoons, I guess), and on other days I can't even reply to text messages from a friend (a day with no spoon). If I know I'll have to see many people on Saturday, I will keep myself "apart" the week before to have enough "spoons" to act like a "normal" human being for the day. I have been known to "disappear" for an hour in the middle of a social event day to go recharge too.
I feel this comment so deeply
As someone who is both introverted and suffers from social anxiety, I really relate to your comment. I had an almost spoonless day today and I spent a lot of time beating myself up about it, because there were no physical reasons for my lack of spoons! However, I do have some mental/emotional stuff going on right now, so I basically gave myself a little lecture about being kind to myself 😂 didn’t make it out of the house today, but hopefully tomorrow there will be more spoons.
I love seeing Moog around here! She's super sweet and love how she explained her days and spoon use :)
Very well explained. I just heard of this spoon theory earlier today. My Occupational Therapist wants me to use this principle throughout the day in order to conserve energy. Thank you. Maurice- Cape Town, SA
Of course I do not mean to diminish the struggles of people with a chronic illness or disability in any way (and I would like to apologize beforehand if this comment reads that way to anyone and am of course open to be corrected), but the capitalist expectation, that anyone has or should have an unlimited amount of spoons / resources to be productive all the time is kind of ridiculous in general.
I'm absolutely a spoonie and have been since I was a small child. Neglected double pneumonia at age 4 almost killed me, and left me with horrible, uncontrolled asthma which ruined much of my childhood. These days--sixty-plus years later--it's the lung damage plus diabetes plus sciatica and I'm lucky to have as many as ten spoons a day to spend.
Yesss loving the chronic illness content. Thank you Hannah and Moog!! 🧡
I have fibromyalgia and came across spoon theory very early after diagnosis. I like it in general and it’s helpful shorthand when I’m around other spoonies, but personally I don’t typically use it as a reference on my daily life or to explain to other people what living with fibro is like. To describe energy/fatigue issues I compare to a phone battery. No matter how much I sleep, I always wake up no higher than 80% (that’s a good day). Sometimes I’m only at 50%. We all know how hard it is getting through a full day of using your phone if it’s only at 50%. If your just texting it might last awhile but if you’re streaming videos, 50% drains fast. And that last 5% can drop to 0 and force a shut down in a matter of seconds. I find non-spoonies understand that a lot better. But with fibro, it’s so much more than energy and I find spoon theory makes it hard for people to understand and pain and brain fog, and the toll those take physically and mentally. On a bad pain day, I can do next to nothing but still have no energy. So yeah, I love spoon theory for a lot of things and for how validated I felt but also find it’s still a little limited when applied across the chronic illness and disability spectrums. But I seriously love the community of spoonies, they’re awesome people. ❤ Great video Hannah!
It feels like I melted my last spoon down, moulded it into 10 miniature spoons and have been surviving off of them for the last 6 months. But because they're so small and thin, they often snap before I finish using them. Yesterday, my last mini-spoon snapped, I think I had an anxiety attack/meltdown of sorts. I'm currently stuck and not sure how to move forward. I have a telephone appointment this evening, hopefully I can articulate what it is I need and I don't leave the call still feeling stuck and overwhelmed. In the meantime, I'll keep watching videos from disability advocates like yourself in the hopes of feeling a little less alone. Thanks, Hannah.
Love this one Hannah!
Once again, you're knocking it out of the park! Thank you so much for this video Hannah, it's definitely going to be useful to me, as I'm one year into my chronic illness and can show this video to people around me ❤
I have been living spoon theory for over a dozen years. It helps me be kind to myself.
i've been struggling with sever panic and depressive episodes for the last year and this really hits the nail on the head. some months it's like i have 1 spoon per day
Such a helpful video thank you Hannah
Spoon theory is so central to my identity and my social circles that I throws me off COMPLETELY when my parents or boss aren't familiar with it. I might link to this video in the future.
Fellow spoony here with a spine condition, ADHD and anxiety. I knew plenty about spoon theory before watching this video (what it was, what it means, how to use it) but I never really use it for myself. Recently I've been very overwhelmed and realizing I just can't keep up with everything, which has been really frustrating. I've been feeling like I will just never get the hang of being an adult. Watching this video was a lightbulb moment. I am a spoony and I need to start using spoon theory for myself! My partner also has ADHD and I literally ran to him explaing how it applies to us and why we need to use it. He totally agrees and I think this will really help us, so thank you
Really loved this! This is such a great say to visualize energy
They also use this theory for dogs, particularly dogs with reactivity or anxiety. Can also use candles blowing out and a bucket for the other way when the anxiety is over filling the bucket and it spills.
I always learn so much from your videos. Thanks for this Hannah and team. Also, so thrilled for the video sponsor for you!
I learned about spoon theory like 8 years ago and as a person with an autoimmune disease it's so helpful to know
Dang so glad you covered this hannah!! Don’t think I’ve ever seen a video on it before
I really appreciated hearing about Moog's experience next to your own! The difficulty with spoon cost varying, so to say, is something I've also come across (I have fibromyalgia and keep knocking joints out of place). Things that cost a spoon on one day (or a few hours ago) can vary wildly in cost and I personally have found that keeping track of it like that is difficult and draining to me, so I've eventually stopped. But there's kind of a faint sense of community to see someone mention their metaphorical spoons and to know what it means. Makes things feel less lonely.
I definitely also get the argument that the model is primarily for disabled and chronically ill people, but I also think to a degree that if everyone started being more mindful of their energy reserves (I also personally don't believe people have infinite spoons, some just seem to recharge them a lot faster - I don't know anyone who is in top condition every single day of their life consistently) maybe it'd be less of an issue altogether for disabled and chronically ill people to do it. I live in an environment that is relatively conservative and I don't like bringing these things up with people I don't know well because I don't have the spoons (I don't need to know the cost, I know I don't lol) to deal with being told that I'm being dramatic and trying to make myself feel special. If it were normalized to keep an eye on your energy levels, I do think that some of the shame associated with it on a wider, systemic scale (vs. a social circle or a safe space online) could perhaps be lessened a bit. Maybe some people who have been pushing themselves to live like they don't have a spoon limit might just naturally notice that their spoons, too, are precious and not as renewable as they thought and might understand at least in concept a little better what people with even less spoons (that don't come back from the dishwasher as quickly) might be feeling like.
Like you say, it's really important to keep the origins in mind and respect them, if something "goes mainstream", starts to be exploited by entities that don't strictly need it and ends up marginalizing the people it was created for that's an issue. But even if it's not the spoon theory exactly, I do wish it were a bit more normalized to be mindful of your energy reserves. Capitalism may not care, but even relatively healthy people are entitled to not exhausting themselves to be productive in every aspect of their life just because they technically can. It could do them AND anyone who doesn't have the same baseline of energy to begin with a favour.
I've never heard of this, thanks for sharing x
Such a informative video
Congrats on your VERY niche sponsor!!
My mum has a stoma, so glad to hear some little product advice
Thank you for being willing to talk about stoma and sharing your stories. I am with you on increasing disability and accessibility awareness. I deal with chronic pain and osteoarthritis throughout my body, so I can totally relate.
I've been recently diagnosed with Autism and this video has really helped me to understand how my energy works thank you so much 💓
Such a fab video! Already aware of/using spoon theory in my life and I’m so glad this video exists so that I can explain it easily to others. Love the Moog content too! We love you Moog! (and Hannah too of course) Great sponsor too - love it when it just fits perfectly ❤❤❤
Absolutely LOVE that Hannah did a video about this!!! It is something I use a lot with my friends, colleagues and family, because I "don't look sick"...
I really like spoon theory, and it has helped me a lot with explaining and understanding my mental health. I deal with ongoing psychotic symptoms including delusions and hallucinations. My meds make it easier for me to distinguish reality from non-reality, but it still takes several spoons to convince myself that what I'm experiencing is not real or based in fact. If I'm low on spoons, or god forbid, out of spoons, I have a very hard time 'snapping out' of my delusional thoughts or realising that what I'm seeing/hearing/experiencing is not real. When I'm in that state of mind, I can barely function. Spoon theory has really helped me to explain this to family and friends, and makes me feel less guilty about to cancel plans or being low energy, because I need to conserve my spoons if I want to keep functioning and not break down.
Fellow spoonie here! Thanks so much to Moog for explaining so well. I also have cfs/ME and just about manage to work part time hours, but can do so little else, I could relate so much! Thanks you for talking about this and making me feel more human! 💕💕
Thank you Hannah! That is the best explanation of spoon theory I’ve ever had in 17 years of chronic illness and really explains why I just haven’t cleaned my house properly since I started a full time job, I have no spoons!
First of all: I loooove the spoon theory!
It has really helped me explain people that I can’t do all those basic things that are sooo easy for them due to my ADHD, depression and potentially autism (starting that diagnostic journey this year)
Second of all: I was at a conference the past two days and spent half of my day looking at the Convatec logo when I wasn’t talking to medical professionals! Never expected to see them on you channel haha
I'm so thankful for you for doing videos like this and talking about and normalizing disabilities. A couple years ago, I was in the hospital for a few weeks with diverticulitis with complications, and if the complications didn't resolve, the next step was a stoma. I was fortunate in that I didn't end up needing one, but having recently watched your content about your disability is literally what got me through those weeks. What would have been paralyzing fear about a stoma had become something that I felt like I could handle if it came to that. Your videos matter, and I appreciate you. ❤️
Hi Hannah, thanks for making this video. I think it's awesome that you build bridges to help people better understand each other. Big props. Love your stuff. As someone who has used spoons theory for a few years I will say it has been helpful in certain contexts, mainly, for me, when talking to other people who are disabled or who struggle with similar things to me. I'll say what I don't like about using spoon theory when talking to healthy people (obviously I am over simplifying for the sake of time but you get the idea). I have tried to explain my daily capacity in spoons to quite a few different healthy people in the past and I always leave feeling misunderstood, sometimes belittles and/or patronized. I feel like people sometimes have a tendency to assume they know what you mean and to equate your spoons to their daily energy reserves and feel like it's the same. Without realizing that, for me, brushing my teeth can cost two spoons on a bad day and for them it might cost them 1/8th of a spoon when they are already starting the day with 3 times as many as I started with. I've heard things like, "well, we all have our limitations" or "I know what you mean, I'm so hungover today, I'm useless"... Don't want to bring down the mood. Just wanted to be honest and to add to this quality information with some advise to people who aren't spoonies themselves but would like to better communicate with the sick or disabled people in their lives. Understanding is not always built off shared experiences. Sometimes, understanding comes from intently listening and asking questions about things you don't understand. I would encourage you to stop yourself the next time you want to say something along the lines of "I completely understand because for me..." and ask yourself, do you completely understand and will your story or comparison truly make that person feel heard and seen or would your time be better spent asking some more questions or just offering words or support and encouragement rather than a "shared" experience. Just food for thought.
Thank you once again for such a good video and being me feel that I’m okay
Hannah thank you so much for making this video, I hadn't heard of this before but as I have a hidden disability of spinal fusion where mobility/physical & mental fatigue affect me everyday despite looking healthy and able will really help me with friends and family and creating boundaries too. Thank you ❤️
I am so very glad I watched this video. I am an older person with two auto-immune disorders as well as diabetes. A lightbulb went on as I was listening to you explain spoon theory. I can use it to think about and manage how depleted I am by mid-afternoon every day, without judgement. Thank you so much!
As a chronic illness and chronic pain disabled person i use the spoon theory daily thank you for making a video about this
It feels very appropriate to be watching this video on a day where I'm almost fully out of spoons (having over drafted myself yesterday). I didn't know about this before, but it sounds like something I want to do more research into. Thank you Hannah!
The explanation was very well thought! I feel seen by this video. I'm autistic and chronically ill, so a fellow spoonie. For me, some days can be incredibly hard, but in others I get an ADHD burst of energy (but the thing is, it's totally random) and people get confused. This theory made people understand better what I go through.
I'm a spoonie! I have eds which affects my joints/causes fatigue and anxiety which affects my sleep. First time hearing about this, will definitely be using it.
This is such an interesting thing to show up unsolicited in my CZcams recommendations
I am a fellow spoonie and have own spoon theroy video on Facebook. Most of my spoons are used for work and advocating for what I need.
spoon theory has been so important to me!! i have chronic pain and a currently undiagnosed chronic illness (doctors are suspecting POTS) and having a way to explain how my resources are limited has been wonderful, especially when explaining to my older family members
The online community I’m part of were focusing on self care and using spoon theory last year to talk about looking after ourselves and the stress of life - particular for mothers who struggle with mental health. Interesting to hear it used in disability terms and find out that’s where it came from! Full respect to that
Thank you, Moog! and thank you, Hannah. I'm also highly aware of the spoon theory and while I don't literally say "i'm low on spoons" or "i'm out of spoons" it is a great way of explaining my lack of energy, for someone willing to listen (and me having the energy for it atm)
Thanks Hannah! I have a chronically ill friend and this video has really helped me understand how she might manage her energy and why she might have to cancel plans a lot more than my able friends
So helpful to put this into a language we understand. This reminds me of the stress bucket to an extent, but also a little different and useful for disabled and chronically ill people and others ♡ 👌🏻👌🏻
Thank you thank you thank you for a great video describing spoons! I'm neurodivergent, have used this system for years and then had to explain it to my new psych recently and really struggled (since most people I already talk to already know about it).
Looks like I'm going to send this video to my psych now!!
only getting to watching this now bc... spoons lol. but just wanted to say I loved this video and will def be recommending it to friends/family. I'm chronically ill & studying nursing so I think your channel will also be so helpful for recommending to families of future chronic health patients too ❤
Spoon theory really just forced me to become more introspective on how I was feeling when I woke up. With my multitude of disabilities some worsen at varying times, so some days I'd wake up with really low spoons & go through my daily routine only to notice that I had made it impossible to actually gain more spoons or enjoy anything for the rest of the day. This was why I altered spoon theory a bit as I found a lot of the things I have to do can only be done with a specific type of spoon, like using self development or mental chore spoons can be very different from using physical chore spoons. Thanks so much for this awesome video! It's a shock for some when they learn that we struggle with limited & varying numbers of spoons in a given day
I really liked your who is it for discussion because I’ve never believed myself to be a spoonie, but I find it to be a great analogy & shorthand for when you just can’t anymore … also, I just don’t know better ways of taking about ability to do stuff.
I’m generally a healthy person and the conditions I have don’t regularly impact my ‘spoon availability’ anymore (I really don’t know a better way of putting it), but I definitely don’t have infinite quantities of spoons & I don’t think anyone does - it’s just that many people are able to recharge spoons faster than they use them. I think this is why so many parents run on empty, parenting consumes way more spoons than anything else I have ever done - just having a conversation with my 4 year old can sometimes be exhausting!
Yes! Thank you. I've been measuring my energy in spoons for years. My friend who also measures in spoons, gave me a pair of earrings made out of spoons, for when I am low and need a boost.🥄🥄🥄
This is very interesting but also quite terrifying. All that kept coming to mind is all the times during the newborn stage that we had to rush my daughter to hospital. Thank you for sharing and helping me understand chronic illness in a more specific and direct way.
I'm watching this while prepping for a flexible sigmoidoscopy (Crohn's is so fun) and I needed this. I've been doing so poorly at work and keeping up with friends. Recently a friend was very mad that I didn't keep in touch, not understanding my past 8 months have been hell and I don't have a spare spoon. I pushed myself so hard last term and now I have no spoons left. I can't just push through and I needed this reminder
first time i did not skip an advert, truly interesting
Fascinating, and potentially useful.
Thank you.
I have had lifelong disabilities (cerebral palsy and autism) but did not feel disabled, I'd always been fairly active I was however in one of the at risk groups for the pandemic.
I tend to take things literally, and do my best to obey the rules, so when I was told to stay indoors as much as I could, and to only go out for essentials, as I live alone, I could work from home, and get essentials delivered, I think you can see where this is going.
I don't drive, I always cycled, walked and used public transport to get around, in 2019 I'd often, on a weekend cycle perhaps 20 miles and walk 3-5 miles in a day, not all in one go, but that sort of distance was realistic for me to do over the course of maybe 4-6 hours, but after 18 months of not doing much I was really unfit, seriously struggling with cycling work and back, after doing it a few days a week for months I'd got to the point where I was able to do it again without too much trouble, then my energy levels collapsed, pretty much overnight, coincidently that was a few weeks after getting the third covid jab (I'm not sure if it is related, but it seems a bit of a coincidence), that was about a year ago, I'm really lucky I have a considerate employer, but I'm frequently finding myself with no energy, some days I just can't concentrate and it seems to affect me for a few days at a time, my productivity at work has gone massively downhill, and I often wake up unsure if I am fit to work, and despite reassurances otherwise, I always feel like I'm letting the rest of the team down when phoning in sick, leading to a few instances of the boss telling me I'm taking at least the next 2 days off sick.
On a good day I can walk perhaps a mile and a half, although that is a huge effort and takes me hours, on a bad day tackling the stairs takes me 5 minutes and leaves me barely able to move for the next half an hour.
As a “healthy” person that has period and have experienced mental illness I can see this soooo clearly. When my mental health is in good shape I totally have the emergency reserve Moog talked about, while I was going through it with my issues the smallest change of plans could fuck up an entire week 💔.
Thank you for this video. I really needed it today. It was super validating. I’ve been trying to get through university since 2015 with ADHD (only diagnosed 2yrs ago 😭) and moderate-severe (treatment resistant 🙃) depression and I think I’m a Spoonie? My depression has been particularly bad for the past year and i would beat myself up over my lack of productivity even when I was struggling to take care of my basic needs. Today I think I experienced the worst brain fog I’ve had and just got terribly overwhelmed and panicky because I expected myself to just get things done “like everyone else.”
You ARE a spoonie! Whilst you now have the diagnoses, you have/had the lived experience of being a spoonie long before that, "normals" don't have to consider their physical and mental capabilities when they want to do "a thing". As a recovering perfectionist, I've spent nearly 25 years learning not to beat myself up about what I haven't been able to do, especially as my health has worsened and my "productivity" has gone thru the floor... Like Hannah said, spoon theory is a reminder that it's not that we are the failure - it's that we weren't given the same amount of spoons as the normies, and society has this expectation of productivity when the playing field is far from level.
This is the best explanation for the spoon theory. I'm going to share it so everyone understands. I'm a spoonie and to have a video so people can understand what my days are like is so great. I would say my social days take more spoons out of me than other days.
I'm just starting work again and worried how my spoons will change to fit in with my illness. Super nervous.
I'm neurodivergent and heard about it before but this video got me feeling like I could benefit a lot from using spoon theory actively, at least for a bit. I think I already behave similarly to a spoony - looking at this weekend in advance I was able to turn down more intense social gatherings and decided to go to one of these gatherings for a shorter time. This should help me rest up better for work next week, which although draining I am adjusting to (especially since I take time out or work from home when I suppose I am low on spoons).
But yeah, just wanted to say that this was an excellent summary and spoons can be a cool way to measure energy as well, even just to get an idea of my 'normal' and how I generally budget.
Spoonie here! I got super excited when I saw you'd done this video. It was especially good timing because I'm having a flare-up of a chronic pain condition tonight, and so I'm very low on spoons and was so happy to get to watch some disability content while in pain! 🙂
Spoonie here. I have Cerebral Palsy and ADHD, figured out the PMDD through watching your channel and a few others.
Spoon theory is very useful.
Really helpful reminder to myself to check in with my body and not over do it
when I talk about spoon theory its never in terms of actual numbers - I think many people just use spoon theory in terms of 'not many spoons', 'not enough spoons', or activities 'taking more spoons than normal'
Insightful and thoughtful as always, for some of future day in the life/routine you could put a spoon counter in the bottom to highlight this video and make sure more people know about it ☺️
God, I felt what Moog described so much. I have fibromyalgia and it truly sucks because as much as I love spoon theory, the number of spoons the same task will take varies so much that I can’t actually plan around it. How many spoons will I use making lunch for myself and my partner? No clue
Spoon theory is a great visualisation tool when you have issues with time- and energymanagement, like with adhd. I generally don't really have an indicator of when I've exerter myself beyond my energylevel, ie I don't know when I've used up all my spoons (and used next days spoons) until its too late and I crash.
Just having an image of a spoon or an actual spoon in my visual field for example will remind me to take breaks and assess the current state of my mind and body, ie how many spoons I've used/have left. With cognative disabilities sometimes even having a note as a reminder is too many steps (seeing the note, reading the note) but an image or an object is basically no steps, just instant reminder.
as an autistic person with a variety of mental health stuff going on i'm still trying to figure out how and if spoon theory applies to me. i'm fairly confident that it does in some way but i'm still very much figuring out how i can best apply it to myself and my personal situations
I have a burnout. And knowing spoontheory really helped with dealing with it. I now have a better understanding about the 'small' things that cost energie (it was a surprise that showering and brushing teeth costs so much) and knowing how many spoons I have when the day starts can make it easier to plan things. Slowly the amount of spoons I have at the start of a day is increasing
This is a brilliant explanation. Thank you. I had heard about spoon theory but didn't fully understand it. Also mentioning breast feeding as energy depleting was brilliant. I don't think I've ever heard it acknowledged before and it's true. I don't regret breast feeding my children (now all adults) one iota but if I'd been forewarned I might have modified just how much else I took on in any given day.
About the last question, I feel like by explaining the spoon theory I can mould my ablist surroundings beforehand into a more accommodating one. So I don't lose as many spoons fighting against ignorance, because I educated the people in my surroundings. I am aware that this is not fully possible for all disabilities and not applicable to situations where I am dealing with strangers, but once I started educating my surroundings my spoon-spending went down significantly. Still have limited spoons due to my condition, but can now do a lot more in a day...