Chronic Illness (Disability) and Spoon Theory | Chronic Disease & Mental Health
Chronic Illness (Disability) and Spoon Theory | Chronic Disease & Mental Health
Spoon Theory for Chronic Disease (& Chronic Pain)
Get the fork out of the way: We’re talking spoons.
What is Chronic Illness?
The CDC reports that 6 out of 10 people in the United States live with a chronic disease.
Globally, the WHO (World Health Organization) estimates 1 in 6 people are disabled: making disabled people the world’s largest minority group.
Chronic Illness (chronic disease) refers to a range of symptoms or diagnoses that persist for at least one year and require medical attention, and impact activities of daily living such as:
Chronic Pain
Irritable Bowel Syndrome (IBS)
Heart Disease
Diabetes
Cancer
Stroke
Ehler’s Danlos Syndrome (EDS)
Alzheimer’s
ME/CFS (Myalgic Encephalomyelitis, Chronic Fatigue Syndrome)
Epilepsy
Multiple Sclerosis (MS)
Depression
Arthritis
Eczema
Autoimmune Diseases
ADHD/ Autism
Hypertension
Asthma
Long COVID
Bipolar Disorder
PTSD (Post Traumatic Stress Disorder)
What is Spoon Theory?
Spoon theory is a framework which conveys the daily and exhaustive decisions required of disabled people; a process and source of energy depletion which non-disabled people do not experience.
“Spoon theory” aids disabled people in identifying, expressing, and monitoring varying symptoms (typically a daily or as-needed basis).
Credit to spoon theory goes to Christine Miserandino, a disabled woman with lupus (learn more at her website here).
While explaining how her disability feels on a daily basis to a non-disabled friend, Miserandino found herself using spoons (the nearest objects to her) to relate her experiences.
It worked, and it stuck! Many people in the disability community are familiar with and use “spoon theory.”
Non-disabled people wake up with limitless spoons: the ability to go throughout the day without considering the impacts from symptoms caused by chronic illness or disability (whether temporary or lifelong).
Disabled people are often forced to make more choices about daily activities, which expends energy.
Each spoon represents a decision, or allocation of energy.
The standard of “1 spoon” is subjective and flexible. One person may use 4 spoons to complete a task on which another person uses 1 spoon.
The amount of spoons a person has each day may vary. Some days may be “good” days, and others may be “bad” days which exist along a spectrum.
While decision making and activities often cost spoons, some activities may replenish (or add) spoons.
Folks may “gain” spoons from:
- Playing with a pet
- Having a positive phone call with a friend
- Engaging in a hobby
- Getting your favorite tea coffee order (note the potential caffeine boost)
- Completing a satisfying task
Things that positively contribute to mood, energy, or well-being, can increase spoons.
Spoons + Chronic Disease = …?
Spoon theory is a communication tool to convey how it feels to live with a unique disability (or disabilities) to other disabled people or non-disabled people.
The framework provides disabled people with a common language to reflect on their fluctuating (and often unpredictable) energy level or symptoms, physical or mental health needs or supports, and more.
Each person will have his/her/their own unique symptoms and processes to manage daily life. Folks in the disability community who use spoon theory often connect with one another by identifying as a fellow “spoonie.”
Medical professionals may be unfamiliar with this language, so it may be helpful to describe some labels you may use.
Spoon theory is framework I use in my personal life and it is a tool I often share with clients.
I identify as disabled; I have EDS (a connective tissue disorder), migraines, and ADHD.
While I would describe my day-to-day EDS symptoms as mild, there are some days that abruptly limit my body.
As a white woman with invisible disabilities, I inherently face less discrimination and barriers compared to other disabled identities.
Disabled people are subject to ableism, the discrimination against people with disabilities for the preference of able-bodied persons.
Disabled people are also uniquely subjected to racism, classism, LGBTQ+ bias, and sexism; discrimination negatively impacts mental and physical health (Akyirem, Forbes, Wad, & Due-Christensen, 2022).
Discrimination is often an additional source of spoon depletion.
To learn more about the complicated experiences disabled people and historically underrepresented groups face in an ableist culture: I highly encourage folks (disabled people & especially non-disabled people) read Disability Visibility, edited by disabled advocate Alice Wong.
(This is an unaffiliated/unpaid recommendation. It is a phenomenal book).
Chronic Disease & Mental Health
Mental health encompasses one’s social, emotional, and psychological well-being.
Processing stressful situations or emotions adaptively has health promoting benefits (learn more about emotion regulation here).
Many people with a new health diagnosis notice difficulty sleeping, changes in energy and mood, feeling irritated more easily, feelings of helplessness or hopelessness, thoughts of suicide, or symptoms of anxiety.
If you or someone you know is experiencing thoughts of suicide or self-harm immediately:
Call 911
Call/text 988 Crisis Line
Go to the nearest emergency department
If you notice one or any of these changes consult with your healthcare provider and explore options for mental health treatment, or take steps to see a mental healthcare professional (How to Find a Therapist)
Coping with a new temporary or lifelong diagnosis often highlights changes other areas of life:
- Your world feels upside down
- Once clear goals turn murk
- Relationships may be changing
- Or you struggle to get through each day
Managing a chronic illness (or multiple chronic diseases) for years also can bring new challenges
- Processing how your body and daily routines have changed
- Having had to adjust or lose meaningful hobbies (such as running, playing a sport, having an active outdoor hobby)
- Loss of relationships
- And the "general" years-long impacts from living with a disability
These responses are COMMON and can impact mental health and well-being:
People with a new health diagnosis often experience depression, anxiety, anger, or grief (Akyirem, Forbes, Wad, & Due-Christensen, 2022).
Mental health issues are treatable, despite 25-50% of mental health issues in the U.S. remain untreated.
Living with a chronic illness or chronic pain is not a choice and often adds additional barriers to daily living or stressors on mental health.
Being disabled is not a bad thing. Struggling with your mental health as a disabled person in an ableist society does not make you "weak."
As a disabled therapist, my work supports the well-being of people who are facing a new a health diagnosis, or people who have had a disease for years and seek to process how life and their identity have evolved.
Call or email me for a free 15-minute consultation or learn more about Stellar Insight Counseling services here.
Chronic Illness/ Disability Resources:
Books:
Disability Visibility (book), edited by Alice Wong
Being Heumann, (book) by Judith Heumann
Online Resources for Alaskans:
Disability Community Resources | University of Alaska, Fairbanks
About Aging & Disability Resource Center | Anchorage Health Department
6 Ways Alaskans Can Beat the "Winter Blues"
Alaska Disability Resources & Advocacy Organizations | OlmsteadRights
Hope’s Services for Individuals with Disabilities in Alaska | Hope Community Resources
Senior & Disability Services | State of Alaska Department of Health
Disability Policy News | AUCD (Association of University Centers on Disabilities)
Additional Online Disability Resources & Organizations:
45 Regulation Activities to Boost Well-Being
The American Association of People with Disabilities (AAPD)
Respectful Disability Language: Here’s What’s Up! | National Youth Leadership Network
Mental Health by the Numbers | NAMI
Chronic Illness & Mental Health: Recognizing & Treating Depression | NIMH
About the Author:
Welcome, my name is Nicole!
I am a pre-licensed mental health counselor working under the supervision of Psychologist Dr. Ekstrom (#196093, #125200) pursuing professional licensure in Alaska. I hold a master's degree in Clinical Psychology from the University of Alaska, Anchorage.
I offer online individual and group psychotherapy services to adult Alaskans. I am an LGBTQ+ friendly and neurodivergent affirming provider; and am listed as a COVID cautious therapist and TBI mental healthcare provider in Alaska. (learn more here)
My free time is usually spent paddling, gardening, reading, spending time with my pets, hiking, or searching my next baking recipe.
Learn more about my qualifications and work with clients here!
References
Spoon theory: https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf
Akyirem, S., Forbes, A., Wad, J. L., & Due-Christensen, M. (2022). Psychosocial interventions for adults with newly diagnosed chronic disease: A systematic review. Journal of health psychology, 27(7), 1753–1782. https://doi.org/10.1177/1359105321995916