Living With An “Invisible” Disability

The waiting room is cozy and small and I am most impressed by the selection of books—not magazines—spread on the tables. I notice a well-worn copy of Tom Wolfe’s A Man in Full. This is a highly specialized neurologist’s clinic, for people with multiple sclerosis. We are all here for the same thing. There are a lot of people here, but I find no safety in numbers. Yet I cling to one thing: Only one of us has a cane.

Roughly 300,000 people live with MS in the United States, and I am one of the disproportionately high percentage of people from the upper Midwest who have it. Though the cause of MS remains unknown, there is professional conjecture: genetic anomalies, exposure to chemicals that unleashes a message for our own bodies to attack the proteins protecting our brains, our spinal cords. Or, maybe, a remnant from a virus we had when we were three.

This past summer I read an article in The New York Times by Liz Schumer titled “How to Disclose a Disability to Your Employer (and Whether You Should),” in which she describes the challenges faced by people with hidden disabilities. She writes that the invisible nature of her unnamed chronic condition is a blessing and a curse—unlike disabled people who must use an assistive device (a wheelchair, a guide dog, canes), Schumer can disclose her disability at her discretion, in the workplace.

So what is an invisible disease? What might cause a hidden disability? I think of it this way: Picture a woman hustling down the street, as she rushes to catch the train uptown. She is returning to work from a lunch break, or running from one meeting to the next. She appears “normal,” at least what society defines as such. Professional. In control. But what we don’t see: that woman has just left a chemotherapy appointment. She is rushing to get home before she becomes ill. She has been down this road before, she knows what to expect. We don’t see the depression, the anxiety—the mental toll it is taking. Do we only imagine cancer patients with sallow complexions, dark sunken eyes, losing their hair? Her cancer is invisible.

There are myriad illnesses and disabilities that are “invisible”: lupus, diabetes, HIV, chronic pain, multiple sclerosis. Hearing and visual impairments. Mental illnesses like depression, OCD, anxiety, and bipolar disorder. According to a recent Centers for Disease Control article, 1 in 4 adults have some type of disability.

For 13 years, I’ve had MS. I was diagnosed just before my 35th birthday, and so far, it’s mostly invisible to others. I do not need a cane or wheelchair. Eventually, many of us will. But you wouldn’t know I have MS unless I tell you. And when I do disclose it to people, more often than not, I’m hit with the well-meaning reply: But you look so good! If only I carried around wallet-size images of the lesions on my brain and spinal cord, I could pass them around like my kid’s yearbook photo: Here is the first lesion they detected. Oh, but look! You have to see this one, they grow up so fast. 

When someone says, “But you look so good!” I hear, You are a liar. I feel embarrassed because I apparently don’t fit society’s idea of what a person with a disability should look like. I don’t use a wheelchair, or a cane. I don’t appear to have trouble walking or talking or using my hands – though I do quite often. A slight slip off a curb, as my balance is off, goes unnoticed. My depth perception off as a result of a lesion on my left optic nerve. You can’t see me willing my left hand—at this moment—to make keystrokes as I type. None of this is rational thinking, but neither is MS—it certainly makes no sense to me after all these years.

Of the 60 million people in the U.S. living with a disability, 27 million are women. And many of those disabilities are invisible. Women, and especially women of color are already at a competitive disadvantage in the workplace—paid less, and more vulnerable to sexual harassment and assault. The unemployment rate among disabled women is just over 8 percent overall. The racial breakdown follows a familiar trend: White women with disabilities face 7.3  percent unemployment; Black women 11.2 percent; Latinx women, 9.8 percent.

It took several months, back in 2006, for my doctors to come to the official diagnosis of MS. It started as I was driving to work one day, when I felt my ribcage constricting, and a numbing with pins and needles—a feeling like someone was wrapping me in ACE bandages from my diaphragm up. I called my friend Jan, who is a nurse anesthetist, who told me to finish my drive to work. She would meet me and take me directly to my doctor. My doctor, who was stumped, referred me to a neurologist. It could be a week or two before I could get in to see him, she told me, but she also warned that my symptoms could get worse—and if so, I needed to get to the ER.

Which is where I ended up. The doctors had to rule out strange tropical diseases, meningitis, and others. Turns out I had none of these ailments. My trip to the ER wasn’t wasted however it was a direct ticket to a neurologist the following day.

Symptoms are varied, lesions are sometimes elusive, too small to show up on initial MRIs. In order to get an official multiple sclerosis diagnosis a person has to have two distinct episodes with symptoms lasting at least 24 hours and separated by at least one month.  My first episode was in the spring of 2006 then the second in the summer. After all the MRI’s, blood tests, spinal taps—this second episode allowed my neurologist to confirm that yes, this is MS. He outfitted me with a crossbody messenger bag of information on MS, medications, courses of treatment, and a CD starring fellow MS sufferer, Teri Garr.

The next weeks were a blur. A nurse administered IV steroids. She was nice and crafty with a coat hanger, prying one open to sling a bag of the scorching fluid from a door jamb to drip for about an hour each day into my veins. Another nurse taught me how to inject the Interferon I was now prescribed in perpetuity in hopes of slowing disease progression.

I finally got to the point I could return to my full-time job; my employers appeared to have been very understanding throughout the long and unpredictable diagnosis process. But the morning I returned to the office, I was fired. They explained that it had nothing to do with my illness. They had been supportive until they realized MS doesn’t just go away. My friend Mary from the office, furious over the bosses decision to fire me, told me straight up: My disability was too unpredictable. When would I lose a month here or there? I wasn’t worth the risk.

Luckily, I have a sister who works in Human Resources, and advised me to immediately file an EEOC complaint. The Americans With Disabilities Act (ADA) added EEOC guidelines to provide recourse against discriminatory actions in the workplace. It turned out to be excellent advice: I got  a six months’ severance and, most importantly, I got to keep my health insurance.

Invisible disabilities come with a caveat. Letting my employer know I have MS isn’t a matter of if, but when. And having been fired for it has made me loathe to do so ever since. But it’s unavoidable. There have been relapses that landed me in the hospital, and the mental fog and fatigue that come with high doses of medications. I have missed deadlines and burned bridges with editors for not explaining my disease. I know now that I must prioritize my health and not let the stress of keeping my MS a secret make it worse.

A 2002 study from the University of Pittsburgh followed 50 women with MS for one year.  They discovered, not surprisingly, that major life events such as divorce, a death in the family, and job loss, affected their disease—often with an MS flare-up within six weeks.

This is true with many invisible diseases. According to the National Institutes of Health people with chronic illness are at higher risk of depression and anxiety that can in turn exacerbate that illness. Countless studies have shown that both physical and mental pain are stressors to the body.

These days, I remember life events through illnesses: How I couldn’t attend a wedding because I was getting my infusions that week. Or, that time I had to cancel my trip because my left hand stopped working and I had to go for a round of MRIs and steroids.

The stress of living with chronic illness and pain feeds the illness. And there has never been a more stressful time to be a disabled person in America. Trump and the GOP play with repealing Obamacare and gutting Medicare and Medicaid. I cried the day I was able to get insurance through New York’s marketplace, because it meant we didn’t have to keep draining my husband’s retirement account to pay for my steady stream of appointments (the specialist appointment cost us $750 alone). I cried because I was overcome with relief—it was one less thing to worry about.