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“It’s All In Your Head!” – Living with an Invisible Disability

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“It’s all in your head!” is one example of the negative reactions those who live with chronic pain and disability experience from those who fail to understand that a person can have a disability, but appear physically well.  It is estimated that 96% of people who live with an illness have an illness that is invisible.  Those who suffer with an invisible disability do not use wheelchairs, walkers, canes, or other assistive devices, and may look perfectly healthy, from what the eyes can see.  This week, I decided to shine a spotlight on invisible disabilities because I do not believe that there is a great sense of understanding or strong awareness about the struggles those who suffer from chronic illnesses endure.

The Term “Disability” Extends Farther than What Is Seen With The Eyes

Invisible DisabilitiesIt is erroneous to believe that the term “disability” only pertains to those with physical or cognitive impairments.  The term “disability” covers any condition that negatively impacts one’s ability to perform daily living activities; certain social roles (such as attending school and completing assignments, and working at a job); and certain functions (such as walking, climbing, hearing, talking, and lifting and carrying).  Those who suffer from invisible disabilities differ in their levels of abilities and limitations.  Some may be incapable of performing any kind of tasks and activities on their own due to the severity of their pain or condition, while others may be able to carry out certain activities, but are extremely limited in their social roles and/or mobility functioning.  Disability, whether it is invisible, visible, or both, is incredibly diverse and subjective to each person.  Even if two people share similar diagnoses or afflictions, their experiences with that particular condition(s) may vary greatly from one another.

What Conditions Constitutes As An Invisible Disability?

The following are examples of symptoms that are subjective to the experiences of the person:

  • Debilitating pain (which can result from medical conditions such as Osteogenesis Imperfecta (OI), or be acquired states of pain such as a person who experiences chronic back pain after an automobile accident)
  • Fatigue (to the extent where it is disruptive to one’s ability to function)
  • Weakness

The following is a small list of the numerous medical and psychological conditions that fall under the invisible disability umbrella:

  • Cognitive limitations (such as Autism)
  • Learning difficulties (such as dyslexia)
  • Mental illness (such as post-traumatic stress disorder (PTSD), schizophrenia, and bipolar disorders)
  • Hearing impairments
  • Visual impairments
  • HIV/AIDS
  • Diabetes
  • Lupus, and other autoimmune diseases
  • Cancer
  • And many more conditions that significantly impairs one’s health status or well-being.

Exactly Who Suffers From Invisible Disabilities?

Below are the current disability statistics for the United States:

  • 16% of the U.S. population, or 50 million Americans, are living with a disability.
  • 11.9% of men and 12.4% of women have a disability.
  • 3.3 million uses a wheelchair.
  • 10 million uses a cane, crutches, or other walking aids.  .

The following statistics covers who exactly suffers from chronic illness, according to the National Invisible Chronic Illness Awareness Week website:

  • Nearly 1 in 2 Americans (133 million) has a chronic condition.
  • By 2020, about 157 million Americans will be afflicted by chronic illnesses.  That number is projected to increase by more than 1% per year by 2030, resulting in an estimated chronically ill population of 171 million.
  • 60% of those who suffer from chronic illness are between the ages of 18 and 64.
  • 90% of seniors have at least one chronic disease, and 77% have two or more chronic diseases.
  • In the U.S., 4 in 5 health care dollars (78%) are spent on behalf of people with chronic conditions.

These statistics may be surprising, but it demonstrates the aforementioned statements made that disability cannot be determined based on the sole use of assistive devices, and that there are many illnesses that may begin as invisible, but later becomes visible as the condition progresses (or worsens).

The Challenges Those with Invisible Disabilities Face

I came across a list on Tumblr that discussed some of the negative reactions and statements made to individuals who suffer with chronic illnesses.  This list showcased the disturbing levels of insensitivity and ableism that is prevalent within our society.  Having your disability misunderstood or disregarded because there are no visible symptoms is a true slap in the face for those who deal with the realness of their conditions each and every day.  No one has the right to say that a person is feigning sickness because they look healthy on the outside or they may have a happy demeanor despite being in constant pain.  (We must remember that everyone handles pain and hardships differently; keeping a positive mindset is how some people handle sickness while others cope with their illnesses by not discussing it with others and keeping their struggles to themselves.)

To say that someone is “faking” pain or illness further perpetuates the discrimination felt by those with invisible disabilities, and greatly divides these individuals from those with visible disabilities.  As a person with a physical disability, I cannot, and most importantly, should not, proclaim that my disability is “more significant” than someone whose disability is invisible.  The challenges and realities that those with invisible disabilities face are just as relevant to what I endure with a visible disability.  To develop an “us versus them” mentality is counterproductive to the demands for respect, understanding, justice, and equality for people of all abilities made by those within the disability community.

Invisible Disability Do Have A Place In The Disability Community

While conducting research for this post, I found two entities that provided information and support for those with invisible disabilities.  Invisible Disabilities Association was founded in 1996 by Wayne Connell to create more awareness about what it is like to live with illness, pain, and disability.  National Invisible Chronic Illness Awareness Week was held in September of this year.  The purpose of the week is to establish a community where those who have invisible disabilities can discuss their life experiences and connect with others who understand them without passing judgment.  Both of these entities allow those within this subgroup to have a concrete place within the disability realm.

I want to hear the stories of those with invisible disabilities, as well as those who provide services, support, offer love and care to someone with a chronic illness.  What obstacles have you encountered in getting people to recognize the fact that you do have a disability, despite what your outer appearance may convey?  How do you RAMP your voice in getting others to understand your plight as a person living with an invisible disability?  How do you want others to perceive you versus the myths that exist about what life is like with chronic illness?  Please share your testimonies with me, either by leaving a comment under this article, or by sending an email to Vilissa@rampyourvoice.com.  Your voices and experiences matter to me, and I want to ensure that Ramp Your Voice! provides a platform for you to be heard and taken seriously within our community.

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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