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{{NeedsImage}} An '''invisible illness''' or '''invisible chronic illness''' (ICI) or '''hidden illness''' is defined as any illness that it is noticeable or evident to others (Vickers, 1998).<ref name="Vickers1998">{{Cite journal | last = Vickers | first = Margaret H. | authorlink = | date = 1998 | title = Life at Work with "Invisible" Chronic Illness (ICI): A Passage of Trauma - Turbulent, Random, Poignant | url = https://www.jstor.org/stable/25611274|journal=Administrative Theory & Praxis|volume=20|issue=2|pages=196–210|doi=|issn=1084-1806|pmc=|pmid=|access-date=|quote="Invisible" chronic illness (ICI) is defined as illness that entails the traditional characteristics of chronic illness while combining the attributes of a condition that is not perceptible, not noticeable, not evident to others--an illness" unseen".|via=}}</ref><ref name="McGarvey2020">{{Cite web| title = Chronic fatigue syndrome: Living with an invisible illness | first = Emily | last = McGarvey | date =February 16, 2020|publisher =BBC News |url = https://www.bbc.co.uk/news/av/uk-northern-ireland-51467408|quote=Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome.<br>The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night.<br>Doctors didn't believe there was anything wrong with Lorna growing up as she looks visibly healthy, but the debilitating illness means she's unable to work and relies heavily on her parents.}}</ref><br /> {{Quote box|text=Unlike a wound that bleeds or requires stitches, a mending limb that is encased in a cast, or malfunctioning legs that necessitate use of a wheelchair, the symptoms of invisible illnesses have no external evidence of suffering that elicit compassion. Instead, the patient often endures suspicion and withdrawal from others.|source=―Sick and Tired of Feeling Sick and Tired. Living with Invisible Chronic Illness, Donoghue and Siegel (2000)<ref name="Donoghue2000"/> | title = Invisible Illness}} ==Examples== Invisible illnesses may be physical or psychological illnesses, for example: <div style="column-count:2"> *[[Arthritis]] *[[Cancer]] *[[Chronic pain]] *[[Depression]] *[[Endometriosis]] *[[Fibromyalgia]] *HIV/AIDS *[[Inflammatory bowel disease]] *[[Irritable bowel syndrome]] *[[systemic lupus erythematosus|Lupus]] *[[Lyme disease]] *[[Myalgic encephalomyelitis|ME/]][[Chronic fatigue syndrome|CFS]] *[[Post-polio syndrome]] *[[Migraine]] *[[Multiple sclerosis]], which can be either visible or invisible *[[:category:Thyroid diseases|Thyroid illnesses]]<ref name="Donoghue2000"/><ref name="Arroll2014" />{{Rp|14-23}} </div> Some invisible illnesses are well understood by medical professionals and have clear [[:Category:Medical tests|medical tests]] and treatments, for example [[diabetes]], but others are poorly understood or [[medically unexplained physical symptoms|"medically unexplained"]] and often go undiagnosed or misdiagnosed, for example [[ME/CFS]], [[fibromyalgia]].<ref name="Arroll2014">{{Cite book | title = Invisible Illness: Coping with misunderstood conditions|pages=|isbn=978-1-84709-306-6|edition=|volume=|language=en|title-link= | url = https://books.google.co.uk/books?id=1oReBAAAQBAJ&lpg=PT19&ots=0hTOdouShM&pg=PT20#v=onepage&q&f=true|access-date= | date = 2014-09-18|publisher=SPCK | last = Arroll | first = Megan A. | authorlink = Megan Arroll|veditors=|others=|doi=|oclc=|quote=|archive-url=|archive-date=|location=}}</ref> ==But you don't look sick!== In both society and the disability / social security systems, people are considered "healthy until proven sick" (Stone, 1984).<ref name="Stone1984">{{Cite book | title = The disabled state|isbn=0-87722-359-9|url= | date = 1984|publisher=Temple University Press | last = Stone | first = Deborah A.|oclc=10912807|location=Philadelphia}}</ref><br> ===Passing for "normal" === People with invisible illnesses are usually able to choose whether to disclose or hide their illness or aspects of their illness, and may attempt to "pass for normal".<ref name="JoachimAcorn" /><ref name="Pilkington2020" /> ===Stigma and discrimination=== The lack of visibility of an invisible illness may avoid some types of [[stigma and discrimination]] but others, for example a lack of social support from family or friends, and difficulty accessing [[disability]] supports.<ref name="JoachimAcorn">{{Cite journal | last = Joachim | first = Gloria | last2 = Acorn | first2 = Sonia | date = 2000 | title = Stigma of visible and invisible chronic conditions | url = https://onlinelibrary.wiley.com/doi/abs/10.1046/j.1365-2648.2000.01466.x|journal=Journal of Advanced Nursing|language=en|volume=32|issue=1 | pages = 243–248|doi=10.1046/j.1365-2648.2000.01466.x|issn=1365-2648}}</ref> Many invisible illnesses are chronic illness, meaning that they are long term health conditions and do not have a known cure.<ref name="Donoghue2000">{{Cite book | title = Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness|isbn=978-0-393-34283-3|language=en | url =https://books.google.de/books?id=0wzftw0hQLgC&lpg=PA5&ots=2BCvanhe5J&pg=PA5#v=onepage&q=bleeds&f=true | date = 2000-09-17|publisher=W. W. Norton & Company| edition = | last = Donoghue | first = Paul J. | last2 = Siegel | first2 = Mary E.}}</ref> ==Signs and symptoms== Invisible illnesses can have many different signs and symptoms, but people usually don't look "visibly ill", for example they generally do not present with obvious signs of mobility problems such as poor coordination or leg braces, and they don't have obvious skin or facial changes such as yellowed skin, extreme pallor, swelling or excessive bruising.<ref name="McGarvey2020" /> ==Effects == The effects of having a chronic illness that is invisible include: * Difficulty finding appropriate medical care * Difficulty getting diagnosed, and difficulty describing symptoms *Symptoms may be inappropriately blamed on stress, known as [[psychologization]] *Inappropriate [[psychosomatic illness|psychosomatic treatment]] approaches can cause harm * Accusations of laziness or malingering, or having a disability illness [[tired all the time|denigrated and dismissed]] * Significant symptoms may be dismissed as the result of age, or [[Hypochondriasis|variations in everyday experiences]], which can lead to [[anxiety]] and [[depression]] * Lack of support from friends and family * Suspicion and withdrawal from others * Confusion, loneliness, feelings of self-pity and self-doubt *Denial of support from the healthcare and [[disability]] systems, causing avoidable physical and financial harm<ref name="Arroll2014" /><ref name="Donoghue2000"/><ref name="JoachimAcorn" /><ref name="Pilkington2020" /><ref name="Selak2012">{{Cite book | title = You Don't Look Sick!: Living Well With Chronic Invisible Illness|isbn=978-1-936303-42-7|language=en | url =https://books.google.co.uk/books?id=1FX2_VQ_I38C&lpg=PP1&dq=what%20is%20an%20invisible%20illness&pg=PR15#v=onepage&q=what%20is%20an%20invisible%20illness&f=true | date = 2012-12-17|publisher=Demos Medical Publishing | last = Selak | first = Joy H. | last2 = MD | first2 = Steven S. Overman}}</ref> [[File:Toxic-positivity-chronicillness.png|thumb|alt=Popular books preach a type of control by strong mind and positive attitude, which motivates some to a better life but crushes others. The chronically ill can berate themselves for not being well. - Donoghue and Siegel (2000)]]<br style="clear:both"> Some invisible illnesses do not have a particular [[diagnostic biomarker|diagnostic test]] or are relatively rare, which can mean that some doctors doubt patients, leading to them [[Medical neglect and abuse|neglecting]] the patient's basic medically needs.<ref name="McGarvey2020" /> An invisible illness is not necessarily a mild or non-serious illness, for example when HIV/AIDS first emerged it caused many deaths and had few visible signs until the disease was in the later stages. ==Treatment== Treatment usually depends on the illness diagnosed, but if there is no clear diagnosis then treatment can be aimed at particular symptoms. ==ME/CFS== [[ME/CFS]] is often given as an example of an invisible illness, but when [[severe and very severe ME|severe or very severe patients]] may look visibly ill, for example as a result of using a wheelchair, visible [[muscle wasting]], or needing a [[feeding tube]]. ==News and articles == *2021, [https://www.edinburghlive.co.uk/news/edinburgh-news/living-invisible-illness-become-pro-20633382.amp Living with an invisible illness: I have become a pro at hiding evidence I'm not well] - Edinburgh Live *2020, [https://www.bbc.co.uk/news/av/uk-northern-ireland-51467408 Chronic fatigue syndrome: Living with an invisible illness] - BBC News *2020, [https://www.huffpost.com/entry/how-to-talk-to-doctor-chronic-pain_l_5e3071f8c5b625d32f441bbd/ How To Talk To Your Doctor If You're Experiencing Chronic Pain] - Huffington Post *2018, [https://www.cnn.com/cnn/2018/08/08/health/iyw-ryan-me-cfs-story/index.html Millions suffer from an invisible disease: My ME/CFS story] *2018,[https://www.nytimes.com/interactive/2018/well/patient-voices-fibromyalgia.html Patient Voices: Fibromyalgia] - New York Times *2009, [http://news.bbc.co.uk/1/hi/northern_ireland/8189640.stm Hidden disorder 'stripped me of life'] - BBC News *2002, [http://news.bbc.co.uk/1/hi/health/1755070.stm M.E. treatment 'must improve] - BBC News :Doctors must recognise M.E. as a genuine illness and bring it "in from the wilderness", experts have said. *2000, [https://www.nytimes.com/2020/07/10/style/invisible-disabilities.html What Happens When You're Disabled but Nobody Can Tell] - New York Times *1996, [https://www.bbc.co.uk/programmes/p00gtwyp M.E.: The Secret Epidemic] - The Rantzen Report (BBC TV) ==Books== * 2021, [[When Force Meets Fate: A Mission to Solve an Invisible Illness]], Jamieson Hill * 2014, Invisible Illness: Coping with misunderstood conditions - [[Megan Arroll|Megan A. Arroll]] * 2005, [[Encounters with the Invisible]]: Unseen Illness, Controversy, and Chronic Fatigue Syndrome, Dorothy Wall * 2000, Sick and Tired of Feeling Sick and Tired. Living with Invisible Chronic Illness - Donoghue and Siegel ==Documentaries == * 2005, [[Invisible Illness - Stories of Chronic Fatigue Syndrome]], Dorothy Wall ==Notable studies and research == * 2011, Invisible chronic illness inside apparently healthy bodies<ref name="Masana2011">{{Cite book | title = Of bodies and symptoms : anthropological perspectives on their social and medical treatment|pages=127-149|isbn=978-84-694-4991-2|edition=|language=|title-link= | url = | date = 2011 |publisher=URV | last = Masana | first = Lisa | authorlink = |veditors=|others=|doi=|oclc=804794624|quote=If visual verification does not indicate the contrary, people might assume that someone is 'healthy until proven sick'... Comparable to the legal term ‘innocent until proven guilty’. Likewise ‘presumption of health’ as an analogy of ‘presumption of innocence|archive-url=|archive-date=|location=Tarragona|editor-last = Fainzang|editor-first = Sylvie|editor1-link=|editor-last2 = Haxaire|editor-first2 = Claude|editor2-link=|chapter=Invisible chronic illnesses inside apparently healthy bodies|chapter-url=https://www.researchgate.net/publication/257934768_MASANA_Lina_2011_Invisible_chronic_illnesses_inside_apparently_healthy_bodies}}</ref> [https://www.researchgate.net/publication/257934768_MASANA_Lina_2011_Invisible_chronic_illnesses_inside_apparently_healthy_bodies (Full text)] *2012, Sick and Tired of Feeling Sick and Tired. Living with Invisible Chronic Illness -[https://www.sjogrens.org/sites/default/files/inline-files/TMS2012-09.pdf (Article, Full text)] *2020, A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs<ref name="Pilkington2020">{{Cite journal | last = Pilkington | first = Karen | authorlink = | last2 = Ridge | first2 = Damien T. | authorlink2 = | last3 = Igwesi-Chidobe | first3 = Chinonso N. | authorlink3 = | last4 = Chew-Graham | first4 = Carolyn A. | authorlink4 = Carolyn Chew-Graham | last5 = Little | first5 = Paul | authorlink5 = | last6 = Babatunde | first6 = Opeyemi | authorlink6 = | last7 = Corp | first7 = Nadia | last8 = McDermott | first8 = Clare | last9 = Cheshire | first9 = Anna | date = 2020-11-01 | title = A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs | url = https://westminsterresearch.westminster.ac.uk/item/v138x/a-relational-analysis-of-an-invisible-illness-a-meta-ethnography-of-people-with-chronic-fatigue-syndrome-myalgic-encephalomyelitis-and-their-support-needs|journal=Social Science & Medicine|language=en|volume=265|issue=|pages=113369|doi=10.1016/j.socscimed.2020.113369|issn=0277-9536|pmc=|pmid=|access-date=|quote=|via=}}</ref> [https://westminsterresearch.westminster.ac.uk/item/v138x/a-relational-analysis-of-an-invisible-illness-a-meta-ethnography-of-people-with-chronic-fatigue-syndrome-myalgic-encephalomyelitis-and-their-support-needs (Full text)] ==See also== *[[Hypochondriasis]] (hypochondria or illness anxiety disorder) *[[Stigma and discrimination]] *[[Medical neglect and abuse]] *[[Medical gaslighting]] *[[Disability]] *[[Ableism]] *[[Chronic illness]] *[[Contested illness]] ==Learn more== *[https://www.theatlantic.com/article/398393/ Living With Invisible Illness] - Jessica Leigh Hester, The Atlantic *[https://www.socialworktoday.com/archive/novdec2007p18.shtml Invisible Illness — What You Can’t See Does Hurt Her] - Jennifer Sisk ==References== {{reflist}} [[Category:Diagnoses]] [[Category:Social issues]]
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