Invisible Disabilities: The Hidden Struggle of Those Suffering
This article was originally published on LinkedIn and has been republished with permission.
Many of us have been told at some point in our lives, “Be kind, because you never know what someone else is going through.” This timeless mantra, ingrained in our upbringing, emphasizes the universal struggles each person faces, often invisible to the naked eye.
However, for those grappling with invisible disabilities, the term “misunderstood” becomes a daily reality. They understand this concept on a level that most of us could never comprehend. These individuals face a unique and challenging way of life. The term “misunderstood” is one they live every day.
Unlike visible disabilities, which tend to elicit a more immediate form of empathy and support, invisible disabilities involve those such as chronic pain, struggles with mental health disorders, autoimmune conditions, and even rare illnesses that are still not fully understood in the medical community. As our healthcare system evolves, more of these misunderstood conditions are being diagnosed and understood. But is our society able to keep up?
The unseen battles faced by those with invisible disabilities can lead to a profound sense of isolation. Those with invisible disabilities often feel very isolated simply because the public, unable to witness the daily struggles, inadvertently contributes to the emotional toll these individuals endure.
Just the aspect of feeling the need to justify or explain the legitimacy of one’s condition can be downright exhausting and very disheartening to these individuals. Given the invisible nature of these struggles, there is a direct correlation with their overall mental health as they navigate a world that often prioritizes what is visible.
Delving into the emotional reality of these conditions reveals a shocking truth- how this unseen way of life is an everyday struggle that mirrors the symptoms they endure.
Contrary to common belief, invisible disabilities affect millions of adults and children across the United States. Exploring the extensive spectrum of these conditions and empathizing on an emotional level allows us to contribute meaningfully to the support that is crucial in this often-overlooked area.
Invisible disabilities are protected by the ADA, but legal rights are often misunderstood.
Individuals with invisible disabilities, protected by the ADA, face a significant challenge in having their rights accurately understood.
As per the ADA, an individual with a disability is “a person who has a physical or mental impairment that substantially limits one or more major life activities.”
Those with invisible disabilities are entitled to the same rights as those with visible symptoms, yet discrimination persists on various levels.
Although the education of disability rights is evolving, there remains a struggle for society to keep up. A person using crutches and a cast for a soon-to-heal broken leg will likely encounter fewer access issues in public spaces than someone who has dealt with years of chronic pain from conditions like multiple sclerosis.
There are many false assumptions and misinformation about disability rights, and these directly impact the everyday lives of those with invisible disabilities.
Approximately 10% of Americans who deal with a physical or mental ailment that impacts their lives fall into the category of invisible disabilities. Very few of these individuals use visible support or seem outwardly unhealthy when in public.
They are often scrutinized in society.
Those living with invisible disabilities often face scrutiny or discrimination because they outwardly appear “able-bodied.” Unfortunately, the term “able-bodied” is often associated with this narrow mindset.
Despite their lives being just as challenging as those with visible ailments, they contend with constant judgment for exercising the rights they are entitled to. Many may require the assistance provided by accessibility spaces, assistive technology, or a service dog. This is unfortunately a very common issue seen within the service dog community. Someone with a service dog for an invisible disability will encounter far more questioning and doubt than someone with visible ailments, even though the service dog may be performing tasks crucial to saving the life of its handler.
People with invisible disabilities often have “good days and bad days.”
This concept is undoubtedly one of the most misunderstood within the disability community. Individuals suffering from a chronic illness may find themselves spending days on end in bed or struggling to complete simple daily tasks.
When they choose to venture into public, it is often on a day that they feel capable of handling it. Unfortunately, many of these individuals can swiftly encounter an event, trigger, or symptom that severely diminishes their ability to function.
Living in a constant state of high alert, most are acutely aware of every space they choose to enter and the people with whom they surround themselves.
"A huge number of people are sick and just walk around with it, carrying this terrible burden that affects every aspect of their life," says Dr. Daniel Sands, a Harvard-affiliated physician.
He highlights the immense challenge faced by patients, and how they often opt to conceal their suffering because of feeling profoundly misunderstood.”
Many people who have suffered a major health issue or trauma develop chronic and invisible disabilities.
Many chronic conditions, stemming from what our society deems “major health issues” or traumas, often fall into the category of invisible disabilities.
There is a common misconception that completing treatment for a well-known medical condition equates to complete healing. Understandably, as a society, we yearn to believe that there is a resolution to these conditions.
Unfortunately, many of these patients find themselves developing secondary conditions or enduring lifelong chronic pain or illnesses post-treatment. This scenario is particularly prevalent in childhood cancer cases, where 95% of survivors experience significant side effects by the age of 45.
These survivors often contend with long-term side effects and are twice as likely to suffer chronic health conditions later in life.
Diagnosis is one of the biggest hurdles.
Another area where individuals with invisible disabilities often feel "unseen" is within the healthcare system.
Although there has been a positive shift toward increased awareness, obtaining a diagnosis for many of these conditions remains an arduous journey. Numerous patients endure years of uncertainty, invest thousands of dollars, and grapple with immense frustration while undergoing countless tests before receiving a diagnosis.
Unfortunately, in many cases, treatment, if available at all, cannot be initiated until this crucial point.
By the time a diagnosis is finally reached, the condition may have advanced significantly, further complicating the therapeutic process. The challenges within the healthcare system for those with invisible disabilities underscore the urgent need for improved understanding and timely access to accurate diagnoses and appropriate treatments.
Awareness is key in overcoming this hurdle.
Many of those living with an invisible disability suffer with their mental health.
Strike up a conversation with someone living with an invisible disability and encourage them to honestly share how hard their life is or the challenges they face. These individuals are often strong-willed, resilient, and hesitant to complain, having mastered an exterior that conceals their struggles.
However, if they truly open up to you, chances are you will be shocked. Beyond contending with debilitating symptoms, they likely have navigated a very difficult path in terms of their healthcare, diagnosis, and treatment options.
Limited choices and the quest for acceptance may also be part of their everyday struggle. They may express that it is easier for them to mask as a coping mechanism due to widespread misunderstanding. Living with an invisible disability can be emotionally exhausting, leaving many feeling misunderstood.
Chronic fatigue, whether physical, emotional, or cognitive, is a common aspect of their experience. Dealing with guilt is a regular occurrence as they grapple with being unable to be the person they wish to be for those around them, often feeling like a burden to others.
The challenges they confront in their daily lives, some of which are touched upon here (yet barely scratch the surface), profoundly affect their mental health.
Their life can depend on the understanding of those around them.
Numerous invisible disabilities are profoundly influenced by the stressors that surround an individual.
For instance, someone grappling with severe PTSD may find that discrimination can trigger debilitating anxiety attacks, intensifying the impact of their condition. In the case of individuals with heart conditions or difficulties regulating their heart rate, a negative interaction has the potential to instigate a life-threatening attack, underscoring the critical connection between external stressors and health outcomes.
Furthermore, the absence of accommodations for individuals with specific triggers for seizure disorders can precipitate catastrophic health events. It's essential to recognize that just because these conditions are not visible, it doesn't diminish their severity or life-threatening nature.
The invisible nature of these disabilities underscores the need for heightened awareness and sensitivity in our interactions, emphasizing the potential ramifications of external stressors on the health and well-being of those living with invisible disabilities.
They are often told, “But you look great!”
If you are someone with an invisible disability, you likely had a visceral reaction to the above statement.
In the disability and chronic illness community, it’s widely acknowledged that this comment ranks among the most frustrating. Revisiting the mantra that we may not always know the battles that others are facing, an individual can experience profound suffering without visible cues to signify distress.
What remains unseen is the exhaustion that accompanies seemingly routine tasks like showering or drying their hair, tasks that can deplete them of nearly all their energy. The invisible struggles persist when we are not aware that the previous day, getting out of bed was an immense challenge.
Hidden from view are the medications they take just to endure an hour-long event. The tears shed in private speak to the desire to feel as good as others perceive them to look. The invisible nature of these battles underscores the importance of recognizing that appearances can be deceiving and that empathy and understanding are crucial in acknowledging the hidden struggles faced by those with invisible disabilities.
We aren’t seeing the struggle, the fatigue, the challenges, or the tears.
Just because we aren’t seeing it, doesn’t mean they aren’t living it.
Author: Jenna Mercer
Jenna is a seasoned writer, editor, and content strategist residing along the captivating coast of North Carolina. With a wealth of experience in various literary domains, Jenna has refined her expertise in crafting impactful content, particularly in the realms of Psychology and Healthcare. It is in this space where her passions, background, and experiences seamlessly intertwine. As an active advocate in patient support, childhood cancer research, mental health, and disability awareness, Jenna dedicates her work primarily to pieces that raise awareness and bring advocacy to those seeking a voice.
Jenna’s commitment to making a difference through literature is deeply rooted in her personal journey as a mother to a childhood cancer and chronic illness warrior. Believing in the profound impact of words, Jenna channels her conviction into each collaboration, striving to evoke emotion, foster empathy, promote understanding, and drive positive change. Her heart and mission are the driving forces behind every piece she collaborates on.
This excerpt is from one of many projects Jenna is a part of within the healthcare community. She welcomes communication from readers who wish to share their stories. If you have a story to share, wish to inquire about collaboration, or have questions about the content/services she offers, please direct all inquiries to her email at JMercer1129@gmail.com
