~ Re-finding Your Identity after / in Chronic Illness ~

Life Can Change in a Minute... A Second...

As we saw in the story of Jenny, life can so quickly change.  

From health, vitality, strength, family, career, job, life can change in a minute - a second.

According to the US Department of Commerce, a person has a disability when he/she has difficulty with any of the following:

• normal body functions, such as seeing, hearing, talking, or walking
  
• activities of daily living (ADLs), such as bathing or dressing
  
• certain expected roles, such as doing housework, schoolwork, or working at a job
  
• performing usual activities, such as driving or taking a bus

Between 34 and 43 million people in the U.S. have some type of disability, and one in eight have a severe disability.

Consider these statistics.  And as you read these, look at the length of this list.  The numbers of disability in this country is staggering.  These are ALL acquired disabilities in adults (i.e. not birth defects; acquired through illness, accident, or other means).

•   Over 325,000 Americans suffer from mild brain trauma every year, from vehicular accidents, falls, sports injury, assaults, or other accidents. 

•  At least 150,000 persons suffer severe head injuries every year.  A study by the University of Cincinnati Medical Center suggests that approximately 700,000 strokes, which is caused when blood flow cannot get to the brain,  occur in the United States every year.  (See Stroke: A Journal of the American Heart Association, Feb. 1998).  

• A conservative estimate for TIA's (Transient Ischemic Attack) in 2002 was at least 240,000 persons in the USA.  (TIA's are often known as a min-stroke). 

• The Texas Office of Governor lists these as National disability statistics:

•  
  • People with disabilities, nationwide: 54,000,000
  • People with severe disabilities, nationwide: 26,000,000
  • Percent of Americans under age 22 with a severe disability: 1.7
  • Percent of Americans over age 80 with a severe disability: 53.5
    
  • Percentage by which the population of people with disabilities under age 18 increased between 1983 and 1994: 47.9
  • Percentage by which the population of people with disabilities over age 65 increased between 1983 and 1994: 13.9
    (Source: National Institute for Disability and Rehabilitation Research)
    
  • Percentage of parents with no disabilities whose spouse has a disability: 8
  • Percentage of parents with disabilities whose spouse has a disability: 27
    (Source: Chartbook on Women and Disability in the United States)
    (Note: Most spouses become caregivers when a major illness occurs. When both spouses are ill or disabled, who then cares for the two people?)
    
  • Percentage of people between ages 65 and 69 with a disability is listed at 43.4
  • (* Note again that stats for the age 18 to 64 age group seem to be missing. Persons in this age group with acquired disabilities often are overlooked and fall through the cracks of public services.)
  • Between ages 70-74 is listed as 46.0
  • Between ages 75-84 is listed as 63.7
  • Percentage of people over age 85 with a disability: 84.2
    (Source: Chartbook on Disability in the United States)
    
    
  • Percent of all disabling conditions caused by injury: 13.4
  • Percent of people with disabilities of musculoskeletal impairments: 17.2
  • Percent of people with disabilities of circulatory disorders: 16.7
  • Percent of people with disabilities of orthopedic impairments: 14.1
  • Percent of people with disabilities of mental impairments: 3.3
    Percent of people with disabilities of visual impairments: 2.1
  • Percent of people with disabilities of hearing impairments: 1.9
    (Source: Disability Statistics Center, University of California-San Francisco)
    
    
  • Percent of children and adults with a physical disabilities who also have learning disabilities, respectively: 29.5, 0.6.  These are broken down in this manner -
    
  • Percent with speech problems: 13.1, 0.4
  • Percent with mental retardation: 6.8, 1.2
  • Percent with mental illness: 6.3, 1.9
  • Percent with back injuries: 2.5, 13.5
  • Percent with heart disease: 0.9, 11.1
  • Percent with asthma: 6.8, 6.4
  • Percent with addiction to drugs or alcohol: 1.0, 0.7
  • Percent with arthritis: less than 1%, 17.1
    (Source: Centers for Disease Control)
    
    

  Average Mean Ages:

  • Mean age of all Americans (with and  without disabilities) : 35.4
  • Mean age of all Americans with disabilities: 43
  • Mean age of all Americans with severe disabilities: 45.5
    (Source: Department of Labor, Bureau of Labor Statistics)

   

• The UAB Health System, in the heart of health care in Alabama, lists disability stats on its website (dated Tuesday, May 16, 2006)
    Statistics related to disability:
  

  • More than 50 percent of persons over age 65 (or 32 million people) have some level of disability.
    
  • Nine million people of all ages are severely disabled and need personal assistance for daily activities.

     

    • Chronic pain affects about 70 million U.S. adults (Note: Estimates very from 30 Million to 50 million.... or 50 million to 70 million... depending on which literature you read.)
      
    • Stroke is the leading cause of long-term, severe disability in Americans. Today, 4.8 million U.S. adults live with the effects of a stroke. Stroke is the leading cause of long-term, severe disability in Americans. About 4.4 million stroke victims are living today; About 600,000 Americans will suffer a new or recurring stroke each year.
      
    • Back pain causes more disability for people under age 45 than any other condition. Seventy to 85 percent of people in the US will suffer from back pain at some point in their life.
      
    • Approximately 2 million Americans experience a traumatic brain injury (TBI) each year.  One brain injury occurs every 21 seconds; about 50 percent of these result in at least a short-term disability. The cost of traumatic brain injury treatment each year is more than $48.3 billion.
      
    • About 7,800 people in the U.S. suffer a traumatic spinal cord injury (SCI) each year. At present, about 250,000 to 400,000 people live with a SCI disability.
      
    • Automobile accidents, firearms, and falls are the leading causes of traumatic brain and spinal cord injuries - two of the most severely disabling injuries.
      

    See also http://dsc.ucsf.edu/pdf/abstract16.pdf

     

It's exhausting to read the list !   But it is actually much longer.  NOT included here are other medical disabilities such as kidney failure requiring dialysis, or persons with Rare Orphan Diseases.

What is shocking is with 9 MILLION persons affected by disability, there is so little discussion about the loss of identity that adults can experience with the loss of their former life!   This is not a subject included in Rehabilitation Services (such as Physical Therapy where the focus is on physical re-training and strengthening, or Vocational Rehab where the focus is on training for or finding a new job).  Doctors never bring up the issue of loss of identity (instead, the person goes from health to the "sick role.")  So, the newly disabled person typically goes through the phases of this loss totally ALONE, with no access to helpers to help sort through the thoughts and feelings that soon develop into a period of Quiet-Desperation.

Please continue reading the articles on this website for information about the stages a person goes through, and how persons begin to re-structure their lives.

Note: The discussion of loss of identity is about adults with acquired disabilities.  This list does not include other physical disabilities, such as birth defects. Children's Disability Statistics :

Of children ages 6 to 14, one in eight have some type of disability. 
Percent of children between the ages of 6 and 14 with a learning disability: 4.5.  

Percent of children 2 years or younger with a developmental disability: 2.6
(Source: Census Bureau)