Millions of people worldwide experience some type of chronic pain. Chronic pain is defined as persistent pain that can last weeks, years, or even a lifetime. The pain may occur anywhere in the body and can happen unpredictably, meaning it could appear while at work, during travel, and at social events intended for leisure. This health concern, often described as a challenging obstacle in everyday life, is experienced by one in five people in the United States.
Many of these people live mostly independent lives, meaning they live as self-sufficiently as possible. But dealing with unpredictable and sometimes unbearable pain greatly influences how smoothly a day can go and how independently someone can get through that day. Those with chronic pain face various barriers to independent living. Luckily perceptions around disability and accessibility are changing.
Every Day Is Different
Uncertainty is arguably the most common characteristic shared across chronic pain-related disabilities. In fact, the term ‘illness uncertainty’ continues to gain prevalence in discussions surrounding chronic pain. Researchers and scientists describe illness uncertainty as the inability to determine the meaning of illness-related events.
As humans, we use well-established signals to understand our environment better; light switches that turn on and off, doors that open and close, elevators that travel up and down. When an item malfunctions, or works in a way we don’t expect, it can be off-putting or even jarring, depending on its function. This unpredictability is what many individuals who deal with chronic pain experience on a regular basis. And because of the nature of chronic pain, relief can’t always be found in medication or treatment.
Those dealing with chronic pain must become relentless managers of their symptoms and levels of comfort or discomfort. Not only can this add a layer of stress to otherwise mundane activities, it can also affect mental health. A recent Mental Health America (MHA) study found that 79 percent of people with chronic pain had either moderate to severe mental health conditions. That’s an overwhelming majority, and research continues to link chronic pain to a variety of mental illnesses. People dealing with chronic pain are far more likely than people without it to experience anxiety, depression, bipolar disorder, and most of all, PTSD.
Fighting against invisible disability stigma
A barrier sometimes disregarded in public spaces, especially in work environments, is the stigma and lack of education surrounding chronic pain and other invisible or hidden disabilities.
Invisible (or hidden) disabilities are usually defined as those that don’t manifest in ways that are immediately obvious to others.
People dealing with chronic pain may face discrimination due to ignorance about such conditions, including invalidating their disability and false assumptions about their work ethic or professional cognizance.
Invalidating a disability can look like challenging a person seated in an accessible seat on the bus, or telling a person to speed up on the sidewalk assuming they are able to do so.
Workspace discrimination is illegal under the Americans With Disabilities Act (ADA), but lack of education about chronic illness can make it difficult for people not dealing with it to understand. Such stigma causes people with invisible disabilities to be less likely to report their disabilities to employers, making it more challenging for workspaces to accommodate their needs.
Understanding the Independent Living Movement
Chronic pain may come with various barriers in everyday life, but that doesn’t mean people with chronic pain cannot live totally independent lives. This is the idea behind the Independent Living Movement (IL) established in the early 1970s to promote accessibility for people with disabilities. IL affirms that people with disabilities are entitled to control over their own life choices.
Pioneering disability activist Ed Roberts sparked the movement at the University of California at Berkeley in response to a curfew imposed on him due to his disability as he was a post-polio quadriplegic.
Hundreds of activists since have pushed for equitable laws and cultural transformation to recognize those with disabilities as valuable and equal citizens in society. Though we’re not living in a totally accessible world yet, much progress has been made. Along with the ADA passing in 1990, the culture surrounding physical and mental disabilities continues to evolve, with a more positive portrayal of people with disabilities in the media today than ever before.
People with chronic pain come from an endless amount of social, racial, and ethnic backgrounds and can be any age. Their pain may come from a variety of different disabilities or disorders, and so it may be difficult to group all people experiencing chronic pain into one group. But the fact remains, the uncertainty and stigma so many people with chronic pain feel can be lessened the more progress society makes towards a more accessible world.
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