The Burden of Invisible Illness

Just because I don’t “look” disabled doesn’t mean I’m not

Laura Kiesel
Dec 17, 2018 · 7 min read
Photo: ake1150sb/iStock/Getty Images Plus

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The doctor I’d emailed earlier that day agreed to a 20-minute phone call with me. He was known for performing a rare procedure I hoped might potentially restore some of the nerve function to my right leg, which had been compromised ever since I suffered severe herniation and cyst formation in several discs in my lumbar spine nearly three years prior. He quickly shot down that hope when I shared my other diagnoses, though, because I had too many other things going on in my body that would make me a risky prospect.

Nonetheless, he stayed on the phone with me, asking additional questions because he found my case fascinating. He was impressed by how familiar I was with medical terminology and different treatments for an assortment of ailments—which was the byproduct of not only being a journalist covering the health care realm but also being a longtime “spoonie” (someone with chronic illness or, in my case, multiple illnesses). Knowing a lot about my body, and bodies in general, is an asset when trying to maintain as optimal health as possible given my circumstances.

As we talked, it became clear that this doctor, like many before, was cynical about my diagnoses. Did I really have all the degenerative damage in my spine and hips I claimed even though I was only in my thirties? He asked me if the picture on my website was current. “It’s from just last year,” I answered. He asked me if I had gained a lot of weight or lost some of my hair in the year since the photo was taken. I hadn’t. He asked me more than once if I was being honest. I was becoming increasingly frustrated, and then he finally said, “It’s clear you have a lot of things going haywire in your body, but I have to admit, you are going to have a hard time getting doctors to believe you because of how you present physically.”

It’s a sentiment I’ve grown used to receiving, though it’s usually not presented in such blunt terms by a member of the medical community willfully admitting the biases of the profession. Despite numerous blood tests, biopsies, and lab images I have to prove my case, I run into this reaction on a routine basis.

We should consider that less than four percent of 117 U.S. and Canadian medical schools have a required course in chronic pain.

Those of us in the chronic illness and chronic pain community are used to hearing the “but you look so good” rebuttal when we refer to our less-than-stellar health situation; it’s become a cliche. Its effects aren’t limited to enduring frustrating back-and-forths with everyone from strangers on the bus to our closest family and friends. It also creates serious roadblocks in accessing adequate health care that ensures an efficient and accurate treatment regimen and leads to us being misunderstood and invalidated by our loved ones and gatekeepers of programs we need to survive.

Women are especially susceptible to this kind of bias, and its implications can be fatal. As I reported on the Harvard Health blog last year, a 2000 study published in the New England Journal of Medicine found that women are seven times more likely than men to be misdiagnosed and discharged from the ER while having a heart attack. This is because the medical community (and society in general) does not take women’s pain as seriously as it does men’s. And it’s especially a problem if we don’t “look” sick because we are then dismissed outright by doctors and sent on our way. Horror stories of this kind of nature abound.

It took me nearly seven years to get a diagnosis of endometriosis via laparoscopic surgery because doctors thought I was just stressed. At one point, a college nurse and nutritionist discounted my complaints of ever-worsening GI issues and chalked it up to me not eating healthy enough and being too neurotic. When I pressed further that I thought something more definitive was wrong with my body (later on, widespread endo would be found strangling huge sections of my bowel), I was told I could not possibly be really sick because I had such thick, shiny hair.

Even as I grew older and more assertive with my doctors, it still took me until my late thirties to finally get a diagnosis of Ehlers-Danlos syndrome—a rare connective tissue disorder—that finally helped explain my body’s immense susceptibility to injury and premature degeneration. These injuries were ascribed by many medical practitioners before as either exaggerated or fabricated.

Despite having diagnoses that explain my symptoms, I still struggle on a regular basis to have my illnesses taken seriously.

In my affordable housing complex, the owner has so far refused to acknowledge my disability at all—repeatedly insisting I get a full-time job to pay their increasing rental rates and expressing an unwillingness to offer me certain modifications and accommodations in my unit even though it is mandated under the Fair Housing Act. This is despite extensive documentation and doctors’ letters attesting to my health restrictions and supporting my accommodation requests.

It has also been a burden to get disability status under Medicaid, which I was finally granted only a few months ago after more than two and a half years of trying. The independent doctor who evaluated me during one of my many appeals spent not even a half-hour with me and then recommended denial to the advisory committee because I seemed “bright, alert and looked to be in good health.”

To understand why doctors come to these damaging conclusions, we should consider that less than four percent of 117 U.S. and Canadian medical schools have a required course in chronic pain, and only one in six schools offer a pain elective, according to a 2012 study (these numbers have improved since then but only very slightly). When doctors don’t even have a basic understanding of chronic pain and its anatomical and neurological effects on the body and mind, they likely also can’t comprehend why and how it’s disabling. This is unfortunate because the National Institute of Health has found that chronic pain is actually the most common cause of long-term disability in the U.S.

Further research shows doctors also often adhere to popular stereotypes of what we tend to think of as disabled—those with clearly visible cues and preference given to men, the elderly, and white folks—with women and younger adults again getting short shrift. The reality is that women are much more likely to have chronic illness and pain than men.

People of all ages, body types, sexes, and gender identities — as well as all racial and class demographics — can be or become disabled.

One study found that older adults were more likely than younger adults to be granted disability claims. Meanwhile, a poll conducted by the website Disability Secrets found that 44 percent of men they surveyed had their initial disability applications approved, compared with only 38 percent of women. These dangerous presumptions of what disabled people look like extend to prejudicial policies that can further harm those suffering from chronic illness and pain.

Ever since Donald Trump was elected into the Oval Office, the GOP has been hellbent on repealing the Affordable Care Act (ACA), otherwise known as Obamacare. The hallmark policy of the ACA was Medicaid expansion in those states that adopted it (over 30, plus the District of Columbia). Though Republicans have lost control of the House, a federal judge just ruled that the ACA is supposedly unconstitutional, opening it up for a potential second round of scrutiny by the U.S. Supreme Court, which this time (since it now leans conservative) might actually toss out the law and, with it, the expanded Medicaid program.

What does all this have to do with disability rights of the invisibly ill? Approximately one-third of all Medicaid recipients are, in fact, nonelderly disabled adults, and their coverage accounts for 42 percent of the program’s expenditures. Expanding Medicaid has helped disabled folks like me, who can still work on a part-time basis, have access to affordable insurance that meets our considerable health needs.

I personally do not have enough work credits to qualify for Social Security Disability Income (SSDI), and though I could qualify for Social Security Income (SSI), it would only compensate me an average of $700 per month if awarded, which would not nearly be enough for me to even make my monthly rent in subsidized housing. (People not qualifying for SSDI includes younger adults who haven’t been in the labor force long enough to accrue the necessary credits; those who worked in positions for state or municipal governments exempt from social security deductions — which is my situation; and domestic workers—usually women—who were stay-at-home parents or worked under the table for employers not willing to pay them on the books.)

And yet, the Republican rhetoric has generally been that Medicaid recipients are often freeloaders who should pull ourselves up by the bootstraps and get on the private market. This flies in the face of facts as those states that expanded Medicaid—thereby doubling its income thresholds and dropping asset limits for those to qualify—actually have higher employment rates for recipients than those states that did not expand. Even when it’s acknowledged that Medicaid recipients may also have health issues that necessitate them being on the program, we are chided and it’s suggested that our compromised health is somehow our fault due to poor life choices. We haven’t tried hard enough to be healthy, this rationale goes. And conservatives aren’t the only ones guilty of perpetuating these falsehoods.

People with chronic illness and disability do not all look a certain way. It‘s not limited to those who are wheelchair users or senior citizens or men or white or overweight. People of all ages, body types, sexes, and gender identities—as well as all racial and class demographics—can be or become disabled. And while marginalized people disproportionately become ill or disabled at higher rates than those who are more privileged, that does not mean it is our fault or that we’re not trying hard enough to be healthy.

Whatever we look like or are, we deserve decent doctors who will listen to us closely and run the proper tests rather than simply making snap judgments based on appearances or assumptions. We deserve health insurance and housing that are safe, accessible, and affordable. We deserve a society that transcends stereotypes and treats us all with acceptance and compassion.

This essay was made possible by my Patreon supporters. If you liked this piece and would like to see more like it, please consider supporting me there.

For the Record
For the Record
For the Record

About this Anthology

For the Record

Stories that confront pervasive stigmas about physical and mental health, selected by Medium’s editors.

Stories that confront pervasive stigmas about physical and mental health, selected by Medium’s editors.

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