Living with an invisible illness: 'I get the feeling my friends see me as lazy’
In October, I was standing outside a park, waiting to interview my favorite artist for a story. I should have been going over questions I wanted to ask. Instead, I was pulling up an app that claimed that it would tell me where the closest public restroom was (it didn’t) and making a mad dash for a Whole Foods four blocks away. By the time I made it back — with one minute to go before the interview’s start time — I was red-faced from embarrassment and sprinting, and so anxious my head was spinning. Not exactly how you want to kick off a big day at work.
Around 125 million people in the United States have a chronic health condition, and an estimated 10% have a medical condition that could be classified as an “invisible” illness or disability. It’s taken me years to admit that I am one of them. I was diagnosed with Crohn’s disease when I was 19, and I count myself lucky: I haven’t undergone surgery, and my symptoms are semi-manageable, by Crohn’s standards. But I’ve watched it undermine my confidence and force me into babbling explanations of why I keep making trips to the bathroom; it has made me feel like an impostor at work and too much for people to deal with.
And I’m not the only one.
For women in the workplace, “invisible” chronic illness — illnesses that aren’t readily apparent with the naked eye — sits at the crux of the ongoing battle over women’s health care, and women’s continuous fight for workplace equality.
“One thing I have seen is a number of friends who have chronic illness, myself [included], running ourselves ragged trying to do more, succeed more, and prove ourselves in order to stand apart from the societal stereotype that we are limited individuals,” Marisa Zeppieri, founder of LupusChick.com, tells Yahoo Lifestyle. “I can tell you every person with chronic illness I’ve spoken to has goals and dreams when it comes to a career, and wants to be a contributing member of society.”
Mina Fonze, who has PMDD (premenstrual dysphoric disorder), says everything about her nine-to-five workday is made more challenging by her invisible illness — especially since it is one with which only women have to grapple. “It sort of feels like work and the environment at the office is the x axis of what should be a very simple graph, but instead of following the general trends, I am just a constant outlier screwing up all the data,” she says.
Impostor syndrome, and the desire to avoid seeming incompetent and weak, are often side effects of invisible illness. This is especially prevalent in a culture where women are still fighting for equal pay, and though men and women experience impostor syndrome in equal numbers, chronic self-doubt is more socially aligned with women.
“I frequently feel like I should be doing more, that my workload should be a continuously growing maelstrom of tasks, and that maybe if I just socialized more, or tried a little harder, or woke up a little earlier in the morning, I would finally feel like I ‘made it’ at my job,” Fonze says. It’s a feeling I know too well: My subconscious braces for the day I get sick during a crucial meeting, or fumble an opportunity because my body can’t keep up.
Ashley Harbison, who also suffers from PMDD, began getting serious about treatment after a second-trimester miscarriage, and has intermittent recesses from work approved by her OB-GYN and psychiatrist under the Family and Medical Leave Act. “I get the feeling some of my co-workers, family, and friends see me as lazy, as less than, or as selfish for taking time for self-care,” she admits. “I have heard some co-workers say things like: ‘We are all tired, we all have problems, and we’re here.’”
“People get sick of you. You get sick of you,” Harbison explains. “We live in a fix-it-right-now culture; we don’t have time to be sick or to be slow. I wake up every morning and fight to feel capable, to feel enough, to find time for self-care, and cling to those I love when I feel like I’m falling apart.”
“The hardest part of school and work in regard to having an invisible illness is having to tell everyone your whole life story in order to feel safe,” says Chloe Goulden, who has epilepsy. “I’m not sick in the way that people can see, but I am sick.”
We live in a do-more culture, exacerbated by the need to constantly prove ourselves at work. The more we pull back the veil of invisible illness, the further we’ll go toward creating a work culture that is more inclusive and more willing to accept versions of capability that don’t seem like the norm. At the crossover of invisible illness and workplace equality sits an idea that our workforce, in general, should entertain: That someone doing their best is good enough.
Or, at least, that’s what I’ll tell myself as I pop the pill on which my body holding it together depends, and walk with my chin up into my next meeting.
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