Posted by: seattledizzygroup | September 14, 2014

Living with an “Invisible” Chronic Illness

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Sept. 8-14, 2014 is Invisible Illness Awareness Week!

If you live with invisible illness you are just one of over 100 million people.

Help raise awareness that nearly 1 in 2 people have a chronic condition in the U.S. and about 96% of those people do not have visible signs of illness.

Together we can make a difference!

More info:  http://invisibleillnessweek.com/

Chronic Illness Facts:  https://seattledizzygroup.org/2013/09/09/chronic-illness-facts/

Understanding Vestibular & Balance Disorders as “Invisible” Chronic Illnesses

This discussion (adapted by Seattle Dizzy Group) was developed by a vestibular support group leader who was inspired by chapter three of the book “Sick and Tired of Feeling Sick and Tired:  Living with Invisible Chronic Illness” by Paul J. Donoghue and Mary E. Siegel.

What is an Invisible Chronic Illness (ICI)?

An Invisible Chronic Illness (ICI) has no obvious outward signs of illness.  Common ICIs include:  Chronic Fatigue Syndrome, Migraine, Arthritis, Multiple Sclerosis, etc.

How do ICIs like vestibular (inner ear) and balance disorders differ from illnesses with more “visible” signs of illness?  (For example, the  degree of acknowledgement/acceptance by society or the level of sympathy/empathy shown by others).

Society’s Views about ICIs

According to the book Sick and Tired of Feeling Sick and Tired (p. 40), “the degree of mental anguish that an individual will suffer from his illness, as well as the amount of care, trust, respect, and compassion he will receive, is dependent upon three factors outside of himself: the social acceptability of the illness; the clarity of diagnosis; and the potential severity of the illness.”

Consider how these factors apply to vestibular and balance disorders relative to other ICIs:

Social acceptabilityRank vestibular and balance disorders and various other ICIs on a scale ranging from low to high social acceptability. For example, Chronic Fatigue Syndrome might rank “low,” while Multiple Sclerosis might rank “high.” How does society perceive people who exhibit common symptoms of vestibular and balance disorders such as imbalance, “brain fog,” or fatigue? Does having a “visible” sign, such as using a cane, increase social acceptability?

Clarity of DiagnosisRank vestibular and balance disorders and various other ICIs on a scale ranging from low to high diagnosis clarity. For example, Chronic Fatigue Syndrome might rank “low” and Multiple Sclerosis might rank “high.” How does society perceive people who have an unknown diagnosis or a diagnosis that is uncommon or poorly understood?

Potential SeverityRank vestibular and balance disorders and various other ICIs on a scale ranging from low to high potential severity. (How life threatening or life altering are they perceived to be?). For example, Chronic Fatigue Syndrome might rank “low” and Multiple Sclerosis might rank “high.”  How different is society’s level of sympathy/empathy for ICIs that have lower versus higher perceived potential severity?

Do the above factors bring greater clarity as to why family, friends, and co-workers may not sympathize/empathize as much as hoped with people who have a vestibular or balance disorder?

Has experiencing a vestibular or balance disorder (or having a loved one with chronic dizziness and imbalance) increased your  sympathy/empathy for people with ICIs?

How Can We Help Make an “Invisible” Chronic Illness More Visible to Others?

Unfortunately, people with vestibular and balance disorders are often misunderstood and stigmatized by society, including being negatively perceived as not sick, exaggerating, lazy, drunk, unintelligent, etc.

What strategies might help raise society’s awareness about vestibular and balance disorders and help increase others’ sensitivity and understanding regarding the challenges of living with chronic dizziness and imbalance?

Share Balance Awareness Facts, Figures & Trivia with others!

Participate in Balance Awareness Week (September 15-21, 2014)!

See also:  10 Ways to Make Your Invisible Illness Visible

Information adapted by Seattle Dizzy Group from:  http://www.vestibular.org/take-action/start-support-group/meeting-topics

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