Spoon theory is a metaphor describing the amount of physical or mental energy that a person has available for daily activities and tasks, and how it can become limited. The term was coined in a 2003 essay by American writer Christine Miserandino. In the essay, Miserandino describes her experience with chronic illness, using a handful of spoons as a metaphor for units of energy available to perform everyday actions. The metaphor has since been used to describe a wide range of disabilities, mental health issues, forms of marginalization, and other factors that might place unseen burdens on individuals.
In her 2003 essay "The Spoon Theory", American writer Christine Miserandino writes about a time she told a friend about her experience with lupus. As they were at a restaurant, Miserandino grabbed spoons and gave them to her friend. Miserandino used the spoons to demonstrate that people with chronic illness often start their days off with limited quantities of energy. The number of spoons represented how much energy she had to spend throughout the day. As Miserandino's friend stated the different tasks she completed throughout the day, Miserandino took away a spoon for each activity. The exercise demonstrated how people with chronic illness may plan their actions in order to conserve their energy. [1]
Those with chronic illness or pain have reported feelings of difference and alienation from people without disabilities. [2] This theory and the claiming of the term spoonie is utilized to build communities for those with chronic illness that can support each other. [3]
Spoons are a metaphor used as a unit of measurement to visualize the mental and physical energy a person has available for activities of everyday life and productive tasks throughout a given amount of time (e.g. a day or week). [4] Each activity can be thought of as requiring some number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished. This is not to say that rest is certain to give a person more spoons. For many people with chronic illness, sleep does not perform its normal function of restoring energy. Also, many people with disabilities may have sleep difficulties, resulting in a continued (chronic) low supply of energy.[ citation needed ]
Because of this, many people with chronic illness have to plan in advance and ration their energy and activities throughout the day. Activities of daily living must often be curtailed or avoided, because they carry an invisible cost in terms of spoons available later for other things. This has been described as being a major concern of people with a (fatigue-related) disability or chronic condition/illness/disease because people without these disabilities are not typically concerned with the energy expended during ordinary tasks such as bathing and getting dressed. The theory explains the difference and facilitates discussion between those with limited energy reserves and those with (seemingly) limitless energy reserves. [1]
Spoon theory has since spread throughout the disability community and even to marginalized groups to describe the exhaustion that may characterize their specific situations. It is most commonly used to refer to the experience of having an invisible disability, because people with no outward symptoms or symbols of their condition are often perceived as lazy, inconsistent or having poor time management skills by those who have no first-hand knowledge of living with a chronic illness or disability. [5] Naomi Chainey has described how the term has also spread to use by some in the wider disability community, and how eventually the non-disabled community tried to appropriate it for other uses, to refer to non-chronic forms of fatigue and mental exhaustion – which she attributes to people with invisible disabilities being a sometimes marginalized group even within the disability community. [6]
Those with mental health issues such as anxiety or depression may similarly find it challenging to go about seemingly simple tasks throughout the day, or to deal with a crisis. [7] [8] Spoon theory could even be used to show the exhaustion of having a newborn baby, as this situation often leads to a chronic lack of sleep on the part of the baby's caregiver(s). [9]
Disability is the experience of any condition that makes it more difficult for a person to do certain activities or have equitable access within a given society. Disabilities may be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple factors. Disabilities can be present from birth or can be acquired during a person's lifetime. Historically, disabilities have only been recognized based on a narrow set of criteria—however, disabilities are not binary and can be present in unique characteristics depending on the individual. A disability may be readily visible, or invisible in nature.
Fatigue is a state of tiredness, exhaustion or loss of energy.
Depression is a mental state of low mood and aversion to activity. It affects about 3.5% of the global population, or about 280 million people worldwide, as of 2020. Depression affects a person's thoughts, behavior, feelings, and sense of well-being. The pleasure or joy that a person gets from certain experiences is reduced, and the afflicted person often experiences a loss of motivation or interest in those activities. People with depression may experience sadness, feelings of dejection or hopelessness, difficulty in thinking and concentration, or a significant change in appetite or time spent sleeping; suicidal thoughts can also be experienced.
Neurasthenia is a term that was first used as early as 1829 for a mechanical weakness of the nerves. It became a major diagnosis in North America during the late nineteenth and early twentieth centuries after neurologist George Miller Beard reintroduced the concept in 1869.
A spoon is an eating or cooking implement, consisting of a small oval or round shallow bowl with a handle.
Disability studies is an academic discipline that examines the meaning, nature, and consequences of disability. Initially, the field focused on the division between "impairment" and "disability", where impairment was an impairment of an individual's mind or body, while disability was considered a social construct. This premise gave rise to two distinct models of disability: the social and medical models of disability. In 1999 the social model was universally accepted as the model preferred by the field.
Invisible disabilities, also known as hidden disabilities or non-visible disabilities (NVDs), are disabilities that are not immediately apparent. They are typically chronic illnesses and conditions that significantly impair normal activities of daily living.
Pain disorder is chronic pain experienced by a patient in one or more areas, and is thought to be caused by psychological stress. The pain is often so severe that it disables the patient from proper functioning. Duration may be as short as a few days or as long as many years. The disorder may begin at any age, and occurs more frequently in girls than boys. This disorder often occurs after an accident, during an illness that has caused pain, or after withdrawing from use during drug addiction, which then takes on a 'life' of its own.
A chronic condition is a health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied when the course of the disease lasts for more than three months. Common chronic diseases include diabetes, functional gastrointestinal disorder, eczema, arthritis, asthma, chronic obstructive pulmonary disease, autoimmune diseases, genetic disorders and some viral diseases such as hepatitis C and acquired immunodeficiency syndrome. An illness which is lifelong because it ends in death is a terminal illness. It is possible and not unexpected for an illness to change in definition from terminal to chronic. Diabetes and HIV for example were once terminal yet are now considered chronic due to the availability of insulin for diabetics and daily drug treatment for individuals with HIV which allow these individuals to live while managing symptoms.
Clouding of consciousness, also called brain fog or mental fog, occurs when a person is slightly less wakeful or aware than normal. They are less aware of time and their surroundings, and find it difficult to pay attention. People describe this subjective sensation as their mind being "foggy".
Management of ME/CFS focuses on symptoms management, as no treatments that address the root cause of the illness are available. Pacing, or regulating one's activities to avoid triggering worse symptoms, is the most common management strategy for post-exertional malaise. Clinical management varies widely, with many patients receiving combinations of therapies. The prognosis of ME/CFS is poor, with recovery considered “rare”.
Clinical descriptions of ME/CFS vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise (PEM) is required, and the number of symptoms needed.
Functional disorders are a group of recognisable medical conditions which are due to changes to the functioning of the systems of the body rather than due to a disease affecting the structure of the body.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, as well as sleep issues and problems with memory or concentration. The hallmark symptom is post-exertional malaise, a worsening of the illness which starts hours to days after minor physical or mental activity. This "crash" can last from hours or days to several months. Further common symptoms include dizziness or faintness when upright and pain.
Johanna Hedva is an American contemporary artist, writer, and musician. They are the author of the 2018 novel On Hell, and Minerva the Miscarriage of the Brain, a collection of poetry, plays, and essays published in 2020. Their work deals with death and grieving, illness and disability, as well as mysticism, ritual, and Ancient Greek myth. They describe their music as "hag blues, mystical doom, and intimate metal," and have cited the influence of Korean Pansori singing and Korean shamanism, as well as Diamanda Galás, Keiji Haino, and Sainkho Namtchylak.
Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE) or post-exertional neuroimmune exhaustion (PENE), is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID and fibromyalgia. PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer. Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.
Crip, slang for cripple, is a term in the process of being reclaimed by disabled people. Wright State University suggests that the current community definition of crip includes people who experience any form of disability, such as one or more impairments with physical, mental, learning, and sensory, though the term primarily targets physical and mobility impairment. People might identify as a crip for many reasons. Some of these reasons are to show pride, to talk about disability rights, or avoid ranking types of disability.
Idiopathic chronic fatigue (ICF) or chronic idiopathic fatigue or insufficient/idiopathic fatigue is a term used for cases of unexplained fatigue that have lasted at least six consecutive months and which do not meet the criteria for myalgic encephalomyelitis/chronic fatigue syndrome. Such fatigue is widely understood to have a profound effect on the lives of patients who experience it.
Pacing is an activity management technique for managing a long-term health condition or disability, aiming to maximize what a person can do while reducing, or at least controlling, any symptoms that restrict activity. Pacing is commonly used to help manage conditions that cause chronic pain or chronic fatigue.
Zoom fatigue is tiredness, worry, or burnout associated with the overuse of online platforms of communication, particularly videotelephony. The name derives from the cloud-based videoconferencing and online chat software Zoom, but the term can be used to refer to fatigue from other video conferencing platforms.