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Not All Disabilities are Visible: Honoring Invisible Disability Week

Anyone can wake up one day with sudden symptoms no one can see or immediately explain.

That includes people of all ages, socioeconomic and ethnic backgrounds, and preexisting health levels. But the physical element of an invisible disability is only one aspect of a suffering patient's experience. Because their symptoms are hidden, they frequently deal with the pain of social exclusion as well.

"You don't look sick" is just a few words and subtext away from “I don’t believe you,” “I don’t want to help you,” or “you don’t need help.”

Education and understanding are the greatest weapons against those ostracizing conclusions and misinformation about invisible disabilities. The more often people choose to accept that disabilities can be hidden (and to spread this awareness), the less often people with invisible disabilities are left to bear their burdens alone.

What is an Invisible Disability?

The Invisible Disabilities Association (IDA) defines an invisible disability as “a physical, mental, or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities.”

This definition is broad enough to include a range of illnesses and symptoms, including PTSD, traumatic brain injuries, diabetes, sleep disorders, renal failure, cancer, lupus, fibromyalgia, Crohn’s disease, hearing disorders, vision disorders, and affective disorders.

Although many people expect to see a clear sign of disability (through a mobility aid like a walker or wheelchair or by a visible physical feature), most people with disabilities have hidden symptoms. Nearly one in ten Americans have a severe disability, but 74 percent of them do not use assistive equipment.

Chronic symptoms like pain, dizziness, and fatigue can profoundly impair a person’s quality of life – but they don’t have a universal look. In fact, onlookers can interpret these symptoms in ways that lead to further isolation.

Pain can look like anger or laziness. Dizziness and fatigue can look like intoxication. Miseducated or unaware family members, friends, employers, colleagues, or law enforcement officers could inadvertently cause harm by reacting to perception rather than reality. As an AMA Journal of Ethics editorial noted, even physicians can treat their patients with skepticism, ignoring their complaints or insisting that the symptoms are “all in their head.”

This constant misunderstanding can create a new set of symptoms – mental, physical, and social comorbidities like anxiety, depression, and decreased income can be direct or indirect consequences of exclusive policies and behaviors that fail to accommodate people with invisible disabilities equitably.

These additional hurdles are often experienced more severely by people who hold multiple marginalized identities. For example, people of color, women, and individuals with disabilities are disproportionately more likely to face obstacles to education, health, and employment. Consequently, a Black woman with an invisible disability faces three-way discrimination.

Despite these tremendous obstacles, people with invisible disabilities continue to nurture their relationships, go to work, and contribute to society. It takes courage and emotional and physical resilience to live this way daily. Advocating for individuals with invisible disabilities is one way to honor their strength and capacity by eliminating needless barriers to their emotional, physical, and financial health.

Living with an Invisible Disability

Most people with chronic, hidden disabilities and illnesses didn’t expect to get sick. Sudden inexplicable symptoms interrupted their plans to live a reasonably healthy life. They can go years undiagnosed or misdiagnosed, seeking second, third, fourth (and so on) doctor’s opinions while experiencing the worst, most constant pain of their lives.

But the hardest part is being misunderstood.

“But you LOOK fine!”

“Can’t you take something for that?”

“What do the doctors say?”

“Why don’t you try…”

People tend to say these things with good intentions. But these questions and statements can be invalidating. They place additional pressure on people who already bear the weight of an illness to prove the legitimacy of their condition and the steps they’ve taken to deal with it.

Imagine the frustration, isolation, self-doubt, and shame people with invisible diseases can carry because people don’t believe them. Unless we are medical researchers or professionals, we can’t do much about someone else’s illness – most likely, the patient is treating it the best way they can with the resources they have. But all of us can do something about the way we respond to invisible disabilities.

Beyond “Seeing to Believe”

Society is uncomfortable with chronic illness – especially if it’s invisible or afflicting someone who doesn’t fit the stereotypes we associate with the word “disability.”

When the 25-year-old says he has arthritis, his friends balk. When the employee repeatedly takes sick time off because of exhaustion, his colleagues roll their eyes. When the mother says she enjoys the occasional edible to improve her quality of life, her peers suddenly become concerned about her happy, healthy children. When the athlete uses cannabis to manage chronic pain, she’s kicked off the team for misconduct.

These responses assume that we can only trust what we can immediately see and understand. As a person with an invisible disability can readily tell you, that’s simply not true. If you want to help, you can make a different assumption. Instead of assuming you have all the information you need from observation, assume you don’t. If you see someone park in the accessible spot without a mobility aid, assume you can’t see their illness (not that they're illegally parking because they don’t have one). When someone tells you that they're sick (but you can't see their symptoms), assume they're telling the truth.

Can we accept that a person doesn't have to be a certain age to have arthritis? Look a certain way to experience back pain? Use a wheelchair to live with chronic mobility issues? If so, we are much closer to making life more tolerable for the thousands of people around us who live with an invisible disability every day.