Disability Doesn’t Need to Be Seen to Be Real

On a cold evening in 2018, a truck rear-ended me while I was driving on a small country freeway in upstate New York. I tell people the impact was so hard, it shattered the car’s glass and broke not only the axle but my back. Overnight, diagnosed with herniated and bulging discs, I joined the largest minority in America—people with disabilities.

Since my accident, I’ve fought not to be angry or afraid. I’m not alone. About 36 million women in the U.S. have a disability. According to a survey conducted by the American College, women are most at risk financially and physically when it comes to disability. An invisible disability, as defined by the Invisible Disabilities Association, refers to “symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences, and mental health disorders, as well as hearing and vision impairments.”

Some people’s disabilities are apparent. Others, like me, whose impairment isn’t always apparent, feel invisible. When I’m not using a cane or bed-ridden, you might not recognize that I’m disabled. On a good day, I present able-bodied. Yet, excruciating back spasms often make it impossible for me to stand or walk for long stretches and sometimes they put me out of commission altogether. So, in a black-and-white world of disabled or not, what’s not seen is marginalized. Since my accident, I’ve had three MRIs, four epidurals, numerous steroid injections, and radiofrequency ablation. I’ve had physical therapy and chiropractic care because I want to avoid opioid drug therapy and back surgery for as long as possible.

Given that our current system distrusts people applying for disability, many disabled people with non-apparent disabilities feel penalized and stigmatized. There seems to be a chasm of misunderstanding when it comes to human discussions of pain. Over 100 million Americans grapple with chronic pain alone. Fibromyalgia is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this hidden condition. People with non-evident medical challenges may be viewed as circumspect or ridiculed for antisocial behavior.

Women often have a hard time being heard, especially when they present illness complaints that defy objective modalities. Historically, women experiencing health challenges had their pain contested, minimized, and dismissed. A 2001 study from the University of Maryland explored why men are more likely than women to be given medication when they report pain to their doctors. That’s how pervasive stigma is—pushing women to internalize their suffering. Worse yet, a 2016 study published in the National Academy of Sciences Proceedings reported that Black Americans are systematically undertreated for pain relative to white Americans. Caroline Criado-Perez, author of Invisible Women: Exposing Data Bias in a World Designed for Men, says there’s a data gap when it comes to women. “The specific issues that affect Black women are lost in larger groups like ‘Black people.’ Part of the problem with the male default is that women are viewed as a minority; they think we’re all the same and just throw us into one big category.”

“It’s the invisible nature of an illness that people don’t understand,” Wayne Connell says. He founded the Invisible Disabilities Association (IDA) in 1996 after his wife was diagnosed with primary progressive multiple sclerosis and late-stage chronic Lyme disease. He was frustrated by the outside perception that she didn’t have a real disability.

“It’s startling,” Wayne said. “Our primary demographic at IDA—chronically ill women between the ages of 35 and 55—feel like orphans. Disregarded, isolated, and often abandoned by their partners, families, friends, and society at large—most of them who spent their adult lives raising children, excelling in their careers, and supporting their partners—are now all alone.”

What became surprising to me was that managing my pain was as hard as finding a doctor to develop a treatment plan that didn’t entail taking addictive opioids. I felt I wasn’t taken seriously when my back wasn’t spasming or when I didn’t need a cane. I kept thinking, What part of my describing what it feels like to have an ice pick stabbing my lower back didn’t register?

Social pressure to appear nondisabled permeates our culture. People with chronic illnesses are encouraged to “work through” their pain, so transparency remains elusive. One of the worst problems living with chronic pain is feeling like you’re living in a stranger’s unreliable and unpredictable body. You can’t plan ahead, which often results in isolation and resentment.

Curious whether other people felt like me, I posted a question on Facebook: “Do you have a health condition that makes you feel invisible? Eighty comments popped up within the hour. Fibromyalgia, MS, autism, diabetes, and a plethora of mental illnesses populated my feed. Many commenters felt discriminated against by a society that minimizes their suffering. People who didn’t know each other began posting supportive comments on each other’s posts. A community was born.

Sawyer, a former college classmate suffering from chronic pain, wrote, “Over the years, I would go to doctors, but it was expensive, and they never believed me, so I would usually give up and suffer through. It wasn’t until a female doctor saw me that anyone took me seriously.”

After endless searching, I found a pain-management specialist who thoughtfully considers my questions and approaches my treatment as a partnership. Wanting to make sure I understood all my options, my doctor sent me to a top spine surgeon, who informed me that an invasive procedure’s risks might not be worth the potential benefits based on my case. What if surgery didn’t alleviate my pain, caused nerve damage, or worse, paralysis?

Today, 30 years after the landmark passage of the Americans with Disabilities Act and many other disability rights, many still ask: How much do we accommodate society by constraining ourselves, rather than asking society to see us? So many have it much worse than me, but this isn’t a competition—it’s about trying to live our best life possible.

In searching for supportive communities, I discovered that many were inspired to become advocates and activists, celebrating the very conditions they once feared. Carol Sveilich, M.A., frustrated by her own chronic illness’s challenges, wrote JUST FINE: Unmasking Concealed Chronic Illness and Pain because no instruction book existed to guide people living with easily concealed but often challenging illnesses and conditions. “Even after years of living with an invisible chronic disability, the person who looks healthy, even to themselves, may not want to be perceived as weak or sickly and then begins to doubt or belittle their own legitimate illness or pain,” she said.

How we see ourselves and how others perceive us is very closely linked. People with chronic health challenges often try to hide their symptoms from those around them, but they also hide the reality of their illness from themselves. Non-visible disabilities are a double-edged sword. I’ve been yelled at when sitting in a seat reserved for disabled people, and I’ve remained silent when meeting someone new.

In a TED Talk, author and clinical psychologist Andrew Solomon said that identity politics works on two fronts: “to give pride to people who have a given condition or characteristic and to cause the outside world to treat such people more gently and more kindly.” He added that “identity politics should expand our idea of what it is to be human.” I think most of us with hidden disabilities want to forge our pain into a narrative of triumph. Yet, the stigma of being “lesser than” is debilitating.

When asked what to do when your disability is challenged or misunderstood, Bruce Darling, the CEO of the Center for Disability Rights (CDR), advises the people he represents to find a way to manage their frustration when dealing with people and not to internalize their disability. Find someone who can support you and learn as much as you can about your disability,” he says. “Information not only allows you to give a better explanation to people who need to be educated, but it also gives you tools to develop your own accommodations that you’re entitled to by law.”

Perhaps, leading a more transparent life begins with finding community because inclusion leads to representation, which drives change. Handicapped by stigma and chronic illness, this group remains silent all too often, rather than asking for the help and support that they need and have a right to expect. Finding others suffering from similar conditions allows us to feel less alone and know that our conditions are valid.

In response to my Facebook post, Sawyer, one of my old college classmates, said, “When someone asks, what does it feel like to have pain like that?” It allows me control over a situation and body I often feel I have no control over. Describing it makes me feel seen like I’m making the invisible thing real for the people around me too.”

Stigma is harmful on many levels, including exacerbating symptoms, creating barriers to success in relationships and vocation, and impacting one’s identity and self-worth. It’s essential to change the way we talk and think about invisible disabilities. Patients, providers, and policymakers need to come together to examine biases.

I don’t know what my future holds—surgery, therapies, or a lifetime of pain. However, I’ve learned the best response to my impairment was educating myself so that I could find the right doctor. I’ve also come to understand that silence is what weakens us. After a Facebook friend wrote, “Thanks for creating a platform to speak on silent disabilities. My hearing loss is the ultimate silence,” I realized how important it is to have community.

For women who live with an impairment that makes them feel less than in a society that values nondisabled—the stakes are much higher. During his advocacy for CDR, Darling has observed that women are disproportionately impacted because men tend to be the policymakers.” Which, to me, sounds like a battle cry. Now it’s time to make some noise.