#spoon theory

I like to have this saved in my phone so I can show friends, family, or random people who are curious to understand the spoon theory and for them to get a better understanding of what we have to do/think about every day.

Every evening for the past week, I suddenly get an almost violent migraine-like attack, that lasts from 2-5 hours, and then abates. I feel nauseous, my head feels like it’s going to burst, my chest burns and every sersory input hurts so so bad. It even gets a little hard ot breathe, and I have to put on my cpap just to feel like I’m getting enough air. It’s so new and terrifying, and I don’t know what to do :((

I’m so tired of my own mother not taking my health seriously. Shes my sole source of income right now, and she uses it to get me to move heavy objects (I have mystery weakness in my legs and back) clean out dusty rooms (Ive recently developed some moderate asthma) and be my older siblings caretaker (I have chronic fatigue to the point where sometimes simply sitting up is too much) . Don’t forget tricking me into eating food I’m allergic to, and guilting me about medical costs!!!

I wish I wasn’t so dependent on my amazing partner. For so long I’ve been in excruciating pain, and all the things that come with that. But I don’t want someone to do everything for me, I like to do things myself and sometimes the most frustrating thing is to want to be free, and to feel like chronic pain and disabilities are just chains holding you back from living the life you want to live.

I feel like I am using my chronic illness as an excuse to for doing bad at school but it really is hard for me. I’m working to get accommodations for the first time and I think they will really help me but my friends and family just think that it’s cause I don’t want to do the work all the time. Why do I feel guilty for trying to get accommodations? I know I fit the requirements for them and I’m not just doing it for the sake of fucking around.

I have this intense chronic pain, muscoskeletal, I don’t have a diagnosis yet since I live in the province and everyone is like “ohh, actually I don’t know what’s wrong with you, there’s something wrong though thats for sure.” Anyway I literally just realized this month, that not walking on my hurt leg or not carrying anything with my hurt arm and supporting them makes them hurt less. Like, this sounds absolute common sense but I never tried or realized it since I didn’t want to look like a limping fool and everyone always told me quite literally to walk off the pain. So baffling.

I don’t even know how I manage to look normal while in extreme pain.

I’m always afraid I’m over sharing in my disability lit class, but it’s because nobody else has explicitly identified as disabled. Nobody in my class uses mobility aids, and a lot of people seem to assume that everyone in class is abled. So screw it, I’ll use myself as a case study and go off about the treatment of invisible disability if I dang well please.

I can’t handle extracurricular activities anymore and it makes me hate myself. I just want to be normal.

5467 here. I’ve scheduled a doctor appointment. No, it’s not an emergency. I just decided I shouldn’t have to live like this. I would want a loved one to get care if they needed it. If a loved one felt like I feel, I would drive them to every doctor it took. So I’m going to prioritize my health the way I would want someone else to.

they always make me feel like shit for taking a break like i took a weekend with no exercise for the first time in over six months and my mom yells at me because she says im going against doctors recommendations even though she knows how much pain im constantly in. ive told her time and again that im only getting worse and she wont let me change what im doing, i blacked out in class the other day because i havent taken a break in so long. i dont know what to do. no one ever tells me theyre proud

Another birthday is another reminder of how much my chronic conditions have derailed my entire life. They’ve robbed me of pursuing anything I once dreamed of. I HATE my birthday. 15 years ago, I never thought I’d feel this way.

I have a billion allergies, even more intolerances, textural issues, and even more issues with food. And to make it worse? I have an ED. Eating is a minefield and I just want a break so bad, but I can’t because if I’m not hyperaware I’ll die, but when I am hyperaware it worsens the ED and is extremely exhausting. For once I’d like to see ableds actually think about the consequences of their actions for disabled ppl when it comes to food and food service and “free food” at meetings and events

I’m glad my high school didn’t do a ten year reunion because all I’ve accomplished this decade is not dying, and I wasn’t even very good at it.

How many times can I say something’s wrong and that I’m in pain before I’m heard? Teachers, therapists, friends, they all agree and suggest I go to a neurologist or rheumatologist but my mother insists I’m just inactive and need to exercise more– even as I’m so fatigued and in so much pain that the two miles home from school leave my legs in so much pain I can barely bend them without wanting to cry. I’m just given vitamin d pills and iron pills because she swears I’m just deficient, even as my migraines last 4 days and are so bad I can’t open or close my eyes– the light hurts and my eyelids put too much pressure on the eyes.

But sure. It’s normal. I’m dramatic, even when I’m so fatigued I need a brace to keep my hands up because they’re just too heavy and I haven’t been able to do schoolwork or hobbies at all.

I wish she’d listen to me so I can find out what the hell is wrong with my body. I just want an answer and help, why can’t she stop blaming me for it and start helping me.

If only I could blackmail, punish or sweet talk myself into doing The Thing (Of which there is a bakers dozen), but sometimes my brain is like no, your sitting on your bed, and feeling unsatisfied and unheard and not doing it

Smeone on here said “Signs of many serious medical events are also just part of my normal life” and if I did get one of those things happening I would not be even to tell or be taken seriously if it was

Between my terribad pitches and my executive dysufunciton its miracle I get anything done, ever ever ever, I wrote a list of all the things I hit a wall at even when I am 100% certain it would do be good to even start to do, like even when I beat down my anxiety, I get all “But how” about a dozen things I either used to be able to do or have curiouisity about trying or would make my life easier et fucking cetera

I’m having to jump through a bunch of hoops in order to get accommodations at work so that i can actually work successfully. But jumping through those hoops is so mentally, emotionally, and physically exhausting that I’m running out of energy to both jump and work, and instead I feel like I’m just failing at everything.

So my IBS has reached a new level. I’m so embarrassed it’s awful. I pooped my pants! Luckily it was in the middle of the night at home, so no one knows but me. I still can’t seem to get over it, and now I’m super paranoid that every gas bubble (which with my IBS, there is a lot) will result in the same thing. I just keep hoping that it was a one time freak thing but idk. Do I need to bring this up with my doctor? Does this mean that my IBS is getting worse? HELP

[Image 1 Description:  A Crowd of people, all colored blue, with the label “Interneters” on them. To the left of the crowd a young man stands out. He is a repeat character. We’ll call him “The Interneter.” He has dark brown skin, short light blue dread-locks. He wears a burgundy colored hoodie, a dark teal V-neck shirt, and dark bluish-grey jeans.
The Interneter says “You never told us what a "Spoonie” is.“

To the middle right is Rachel, we can only see to the bottom of her shirt for now. (She has pale white skin, short and messy blonde hair, teal shirt with ferns printed on each side, Maroon shorts, light cyan thigh-high stocking with cut outs of leaves on them, maroon shoes).
Rachel, smiling wearily, looking right at us, holding her index finger up:”Well, you could just google it. But hey, what the heck? Why pass up an opportunity to be the first person who tells you what it means?“ 

We see Rachel again on the lower left side, smiling while raising an eyebrow, holding her left hand to her face, and her right hand out towards us: "Ya  ready?” 

The crowd lines the bottom of the image. The Interneter stands in the middle, with a speech bubble above “Yes.”and a speech bubble to his bottom right, “That’s why we asked.”]

[Image 2 Description: There is a lavender square at the top of this image, on it is the text: 
“Spoonie” comes from a disability metaphor first described in a 2003 essay by christine miserandino called “The Spoon Theory” in which she tells the story of trying to explain to a friend what it feels like to have lupus, using spoons as visual representation of her daily energy. She actually handed her friend a bouquet of spoons and said: “

Below Christine, a white woman with long brunette hair, a white headband, purple dress shirt and jeans, holds out a sparkling bouquet of spoons saying "Here you go”. 

Below this we see her down on one knee. To her right her friend, female, brown skin, long braided dark brunette hair with a reddish tint, blue over-all dress, and teal leggings, sits on a stool holding the spoons Christine handed her.

“You have Lupus.” Christine says, to which her friend nervously responds “Haha, whaaat?…… Please explain.”]

[Image 3 Description:Another lander square fills the top of this image, on it is a quote from Christine's Essay, 
“Most people start  the day with unlimited amounts of possibilities- energy to do whatever they desire…for the most part, they do not need to worry about the effects of their actions…I wanted something for her to actually hold, for me to then take away. If I was in control of taking away the spoons, then she would know what it feels like to have something else being in control.” 

Below Christine sits alone, her legs “criss-cross”. She is smiling at us and holds a giant spoon. Around her are little blurbs in purple text, “Might actually own a giant spoon” “Has done awesome advocacy work” “Read more at butyoudontlooksick.com (if you want to)”]

[Image 4 Description: a chart titled “How Spoon Theory Works”. A single spoon equals a unit of energy that a person can use safely. On the left is “spoon cost per activities” on the right is icons to show the activities.

1 spoon; Getting out of bed, taking medications, changing clothes. 2 spoons; Watching a tv show, a microwavable meal, using the internet.3 spoons; Enagaing in a small activity like art, cleaning something, making a meal that required stove or oven.4 spoons; Taking a shower, leaving your home, socializing.

Narration text: Why use it? I’ll let this quote by a doctor who was originally using buckets of water (???) with patients explain.
“Using analogies and/or metaphors…can help clinicians and patients’ loved ones get a better understanding of the impact of specific activities on a patient.” (John Hopkins Neurologist Scott Newsome, DO, on the topic of “Spoon Theory”)]

[Image 5 Description: The Interneter is looking worried, sweating. He says to Rachel,

“Oh wait, so I have major depression disorder, insomnia, and ADHD. During my last episode, I was barely able to make it to one class a day, and maybe get one meal. My insomnia felt uncontrollable. I ran out of mental brain power for my classes, but I still attempted as much class work as I could, even if my brain couldn’t fully show up. Don’t get me wrong- I still tried, so hard. Even if I was too depressed to feel things like ‘normal’ I still wanted to be embracing my college life. I feel like spoon theory would have really helped me in times like those. Especially since I haven’t found an antidepressant that works on me yet. I know it’s not like what you go through, like chronic physical illness. I wouldn’t want to make less of your experience or appropriate this term. I’m just wondering if-”

 Rachel, looking calm, finding The Interneter endearing and smiling slightly, “Your experiences are just as valid and the level of impact your depression has absolutely qualifies you as a spoonie.”]

[Image 6 Description: Narration text  “Today  a spoonie is someone with a condition that causes limited amounts of physical and/or cognitive energy, such as chronic illness, mental illness, or disability. It’s also used by neurodivergents who deal with persistent energy limitations.”

Below sits 4 girls all smiling, waving, and looking at us, left to right; The first girl has an average frame, tan skin, long navy blue hair, a maroon hat, faded pink pants, a blue/purple/lavender striped shirt, and cutting scar on her arms. Second girl is Kitt, she was in another comic, she has a plus sized frame, dark brown skin, shoulder length curly/dark brown hair. she wears a teal dress with white strips, a waist long blue jacket, blue shoes, her left left is a purple prosthetic. Third girl, she is Asian, very light but still tan skin, with black hair in cut in a pixie style. She has on a white sweat shirt that has lavender sleeves and a salmon color at the bottom, in the center is the rainbow infinity sign for neurodivergence. She has on mint pants and wear white and salmon colored sneakers. On the floor below them sits Rachel. 

Narrative text "Not all of us are literally measuring out energy in terms of spoons, but having such a metaphor is extremely helpful.“]

[Image 7 Description: Narrative text "Spoon Theory embraces acknowledgment of a condition’s control, which is weirdly liberating because this reminds a person:”

Girl number 3 is on the right is whispering to The Interneter “Lack of control isn’t proof of personal weakness. You don’t have to beat yourself up for experiencing your condition.” 

“I know that…” the interneter says shyly, blushing and smiling.

“Do you though?” Rachel says from the left.

Below her is girl number one. “Do u? I’ve been doing this for 13 years and even I forget sometimes.”]

[Image 8 Description: Narrative text “For young people in particular, spoonie is the first word a person may use when starting to rewrite what their life with their condition could look like.”

The Interneter lays flat on his bed, we see him from the side looking hopeful “Having to live life this way isn’t easy, but I want to make it work.”

Below we see he is centered on his bed holding 1 spoon, “especially since I’m still having that episode of depression.” On the right side his words continue “I didn’t say anything because I was afraid of messing up the flow of the comic.”]

[Image 9 Description: Narrative text “Spoons can be a silly thing to associate with possibly not having enough energy to manage basic survival activities, which is one reason some don’t bother using the term at all. Still, it’s easier to say,”

A woman, standing in the center of the image with a long purple dress, short brunette hair, and a purple walking cane, holds a hand to her chest smiling “I’m a spoonie!”

To her left is a large man all in red, hand on his hips smiling, “My own experiences of feeling tired helps me empathize with you. You make me feel validated.”

To her right is a little girl colored pink “Spoons are good!”

Next to her is a woman in maroon “Such a cute and positive take!”

At the bottom of the image narrative text says “Rather than bring folk’s moods down with-”]

[Image 10 description:  “My body is disabled! Living an existence with a condition that is unpredictable and invisible sometimes breaks my brain! Please don’t shut me out until I’m "Fixed”. Just respect my limits.“
Rachel says, now in the center of the people instead of the purple-dressed spoonie. She sits in her wheelchair with legs up, holding her arms out, her expression is crying yet smiling.

The large man to her left has his arms folded, now very uneasy "How do I tell apart your "disability” from excuses, self pity, and faking stuff? And who sits in a wheelchair like that?“

On the right the little pink girl is crying, her maroon mother bending down to hold her. "Isn’t "Disabled” bad?“ the girl ask.

Her mother responding ”Nothing we need to worry about, sweetie. There are plenty of programs that think of the disabled so we don’t have to.“

Narrative text, ”Yes. Spoonie can at times feel detached just enough from harsh reality to ease people’s discomforts.“] 

[Image 11 Description: Narrative text:” Perhaps detached enough for misguided normies to think,”

A young woman standing in the center with one hand on her hip and one raised with her index finger pointed upwards says "Hey! I feel like I have limited energy to! I like this "spoons” idea. It will help me be mindful and proactive with my energy! I’m a spoonie now!“

She is white woman with tanned skin, long bleach blonde hair in a pony-tail, wearing grey yoga pants and a green tang top.  On her tang top are the words "Has no condition is just human”.  

To her left Girl number 3, Kitt, and Rachel are huddled looking at the woman.“Don’t-”says girl number 3. “Oh no, wait-” says Kitt. “You’re not one now, but hey, you’ll be one of us eventually. No need to rush.” says Rachel.

On the left is a young hipster male all in orange “You’re just a product of obsessive online health trends.” He calls out. 

Narrative text “Let’s hope it doesn’t turn into the 'snuggie’ of disability lingo.]

[Image 12 description: Narrative Text: ”Now, being disabled by a condition, especially it’s fatigue aspect, doesn’t mix well with the 'hyper-productive’ narrative that today’s society puts out.“ 

A Pinkish-maroon leg with the words 'society that doesn’t fully realize the systemic harm of it’s ableism’ on it, kicks a stick figure of the Interneter high up into the air in a Team Rocket fashion.

 ”Looks like having problems with my human body is causing me to be considered less of a human agaaiinn!!!“ The interneter says, surrounded by anime sparkles. 

Narrative Text ”Still, being active, productive, and accepted by some form of community, lay the foundations for self-confidence and a sense of worth. Contributing online is one way even the most debilitated amount us have managed a version of that foundation.“]

[Image 13 Description: Narrative text: ”Disabled communities are sources of support, love, guidance, and empowerment built upon collaboration, inclusion, and knowledge. They help bring together people with a willingness to listen, because they all know the value in feeling heard.“

Two horizontal rows of a diverse group of people with disabilities, drawn to show them all in bed,  all interacting with each other like the would if the were together in person. Below each person is an awareness ribbon to indicate the condition(s)they have.

 From left to right, top row; A young woman with very dark brown skin, black hair in a bun, is looking concerned and reaching for a young man in the row below her. He is black with slightly lighter skin, very short hair, a 5 o'clock shadow, wearing glasses. He is reach towards her with is left arm, his right arm is curled due to his medical condition. 
Next in the top row, a  Young woman with curly brown hair, tan skin, glasses, and cutting parts on her arms is smiling and being handed a book by a young white male with Downs-Syndrome, he hair short light brown hair and glasses. 
A young woman with tan skin, glasses, wearing a hijab, has a pink prosthetic arm holding a piece of paper, and is using her other arm to hold hands with the person she is smiling/talking with- a thin non-binary with short blue pixie hair and braces on her elbows and right arm. This person is also holding a piece of paper, eyes shut from laughing, with happy tears coming from their eyes.

Bottom row; Next to the young man with dark skin, is a plus-sized woman with white skin, her hair is deep violet in a pixie cut. She is holding a yellow ribbon, looking concerned and speaking a ”?“ as she taps the should of the girl next to her. This girl is Asian with black hair in a short ponytail, she looks back at the woman with the ribbon, her arms are on the back of the next woman, whom she is comforting. This woman has medium dark skin, half her head is shaved, the other is short navy blue dreadlocks. She is curled up and crying, below her is a yellow ribbon next to a purple one. The young man on her left has his left arm around her, and has a sympathetic expression, talking with the woman to try and provide comforting. He has tan skin and short curly brown hair, with short curly brown facial hair. 

Narrative text: ”Spoonies are just one part of this collective, their efforts displaying that a condition’s control isn’t proof of weakness, as if can exist even along side massive amounts of inner strength.“]