Invisible illness

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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).[1][2]

Invisible Illness

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.

―Sick and Tired of Feeling Sick and Tired. Living with Invisible Chronic Illness, Donoghue and Siegel (2000)[3]

Examples[edit | edit source]

Invisible illnesses may be physical or psychological illnesses, for example:

Some invisible illnesses are well understood by medical professionals and have clear medical tests and treatments, for example diabetes, but others are poorly understood or "medically unexplained" and often go undiagnosed or misdiagnosed, for example ME/CFS, fibromyalgia.[4]

But you don't look sick![edit | edit source]

In both society and the disability / social security systems, people are considered "healthy until proven sick" (Stone, 1984).[5]

Passing for "normal"[edit | edit source]

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".[6][7]

Stigma and discrimination[edit | edit source]

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.[6]

Many invisible illnesses are chronic illness, meaning that they are long term health conditions and do not have a known cure.[3]

Signs and symptoms[edit | edit source]

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.[2]

Effects[edit | edit source]

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 treatment approaches can cause harm
  • Accusations of laziness or malingering, or having a disability illness denigrated and dismissed
  • Significant symptoms may be dismissed as the result of age, or 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[4][3][6][7][8]
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)

Some invisible illnesses do not have a particular diagnostic test or are relatively rare, which can mean that some doctors doubt patients, leading to them neglecting the patient's basic medically needs.[2] 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[edit | edit source]

Treatment usually depends on the illness diagnosed, but if there is no clear diagnosis then treatment can be aimed at particular symptoms.

ME/CFS[edit | edit source]

ME/CFS is often given as an example of an invisible illness, but when 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[edit | edit source]

Doctors must recognise M.E. as a genuine illness and bring it "in from the wilderness", experts have said.

Books[edit | edit source]

Documentaries[edit | edit source]

Notable studies and research[edit | edit source]

  • 2011, Invisible chronic illness inside apparently healthy bodies[9] (Full text)
  • 2012, Sick and Tired of Feeling Sick and Tired. Living with Invisible Chronic Illness -(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[7] (Full text)

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. Vickers, Margaret H. (1998). "Life at Work with "Invisible" Chronic Illness (ICI): A Passage of Trauma - Turbulent, Random, Poignant". Administrative Theory & Praxis. 20 (2): 196–210. ISSN 1084-1806. "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".
  2. 2.0 2.1 2.2 McGarvey, Emily (February 16, 2020). "Chronic fatigue syndrome: Living with an invisible illness". BBC News. Lorna Bryson, 25, suffers from Myalgic Encephalomyelitis (ME) also known as chronic fatigue syndrome.
    The illness means she has a low immune system, gets headaches, sore muscles and joints, and needs at least 12 hours sleep every night.
    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.
  3. 3.0 3.1 3.2 3.3 Donoghue, Paul J.; Siegel, Mary E. (September 17, 2000). Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. W. W. Norton & Company. ISBN 978-0-393-34283-3.
  4. 4.0 4.1 4.2 Arroll, Megan A. (September 18, 2014). Invisible Illness: Coping with misunderstood conditions. SPCK. ISBN 978-1-84709-306-6.
  5. Stone, Deborah A. (1984). The disabled state. Philadelphia: Temple University Press. ISBN 0-87722-359-9. OCLC 10912807.
  6. 6.0 6.1 6.2 Joachim, Gloria; Acorn, Sonia (2000). "Stigma of visible and invisible chronic conditions". Journal of Advanced Nursing. 32 (1): 243–248. doi:10.1046/j.1365-2648.2000.01466.x. ISSN 1365-2648.
  7. 7.0 7.1 7.2 Pilkington, Karen; Ridge, Damien T.; Igwesi-Chidobe, Chinonso N.; Chew-Graham, Carolyn A.; Little, Paul; Babatunde, Opeyemi; Corp, Nadia; McDermott, Clare; Cheshire, Anna (November 1, 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". Social Science & Medicine. 265: 113369. doi:10.1016/j.socscimed.2020.113369. ISSN 0277-9536.
  8. Selak, Joy H.; MD, Steven S. Overman (December 17, 2012). You Don't Look Sick!: Living Well With Chronic Invisible Illness. Demos Medical Publishing. ISBN 978-1-936303-42-7.
  9. Masana, Lisa (2011). "Invisible chronic illnesses inside apparently healthy bodies". In Fainzang, Sylvie; Haxaire, Claude (eds.). Of bodies and symptoms : anthropological perspectives on their social and medical treatment. Tarragona: URV. pp. 127–149. ISBN 978-84-694-4991-2. OCLC 804794624. 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