It’s a problem shared by millions of Americans. Experts, patients, and researchers offer ways to cope.
Lizz Schumer was diagnosed with fibromyalgia when she was 25 years old, although she first experienced a variety of confusing symptoms several years earlier when she was in college.
“It started with chronic pain in my hands, wrists, and joints,” she says. “I also had persistent dizziness and chronic fatigue. And then there’s something called brain fog, which is basically that my brain works more slowly and not as effectively as it should if I haven’t gotten enough sleep, or if I’m really stressed out.”
All of these symptoms can make Schumer’s daily life feel challenging, especially at work; as a writer at a media company, her main task is typing. But doing that for long periods of time can be nearly impossible if she’s having a particularly pain-filled day. She’s thankful that her job is mostly seated, and says she tries to write down obvious task reminders like “transcribe 2 p.m. interview after I get off the phone,” to make sure she doesn’t forget her to-do list when brain fog descends. She also works with her manager to rejigger deadlines if she’s sick.
Schumer isn’t alone in her struggle to manage a job while also managing a chronic illness. Recent statistics from the National Health Council (NHC) show that more than 40% of Americans are currently living with chronic illness. And according to a 2006 article in Organizational Dynamics, 60% of afflicted people continue to work in some capacity at both full and part-time jobs.
The NHC defines a chronic disease as an illness that lasts longer than three months. Most chronic illnesses cause some limitations to what a person can do on a daily basis, and they often require ongoing medical care. Chronic illnesses include conditions like arthritis, musculoskeletal pain, diabetes, asthma, migraine, heart disease, irritable bowel syndrome, depression, endometriosis, fibromyalgia, and many others.
A chronic illness can be particularly difficult to manage if you’re a person with a inflexible, full-time office job. That’s partially because many chronic illnesses, like depression or fibromyalgia, are relatively invisible, which can lead to stigma and questions about the validity of a person’s condition. The NHC also notes that many chronic diseases are marked by variable progressions, with flare-ups followed by periods of remission; this makes them tough to plan around.
That said, work is an important part of the human routine, whether you’re struggling with a chronic illness or not.
“I often hear my clients say, (work is) about identity, engagement and being involved,” says Rosalind Joffe, a private practice career coach for people with chronic illnesses. “By and large, the people with whom I speak need to work for financial reasons, but the driver is that they have to keep working, otherwise they feel like they are just their illness.”
In a 2006 article, Joffe and her co-author, Joy E. Beatty, wrote: “Keeping illness information hidden allows people to retain some control of their public image. However, hiding information requires careful monitoring of one’s behaviors at all times. It can also backfire: if an employee’s productivity suffers and colleagues do not know the cause, they may assume the employee is lazy or incompetent.”
Finding a job that accommodates your needs
Research bears out the importance of this: One 2008 study from the Psychiatric Rehabilitation Journal found that individuals who worked saw significant benefits in recovery from mental illness compared to those who didn’t. The people in the study said that work gave them financial benefits, helped to increase their useful coping strategies, and provided additional social support. Additionally, a 2003 meta-analysis found that people who worked satisfying jobs also had better health outcomes, whether or not they were managing chronic illnesses.
Finding the right job can be challenging when you have a chronic illness that requires constant monitoring and flexibility. It’s especially complicated in the U.S., where most companies still don’t offer resources beyond a few days of sick leave each year for managing acute conditions like the flu or a cold. The Family and Medical Leave Act allows employees to take up to 12 weeks each year off, unpaid. And some states are starting to implement a paid version of this legislation, too, although there are still many questions about who will qualify to take compensated time off; if a chronic illness isn’t defined as a disability, can you still take paid leave?
“I have absolutely gone to work before I was ready in order to save PTO for emergencies.”
“I’ve heard of companies that offer unlimited PTO so that their employees can feel valued and have time off when they need it,” says Ashlie Kirkpatrick, a sales enablement consultant who has endometriosis. “I currently have limited PTO which must be used not only for vacations, but also for childcare emergencies, illness, and in my case, doctor visits, surgeries, and recovery from surgeries. I have absolutely gone to work before I was ready in order to save PTO for emergencies.”
Hannah Olson was straight out of college, working at her first job, and struggling to pair work with Lyme disease, which she was diagnosed with a few years earlier. She had gastrointestinal and neurological symptoms, among others. “I got my dream job in digital marketing at a D.C. design firm,” she says. “I wasn’t very upfront about my Lyme because I didn’t want them to know. I didn’t want to be judged differently, and I wanted to look just as capable as everyone else.”
At the time, Olson had a PICC line, or a semi-permanent catheter, in her arm for antibiotics she was taking and she would hide the line under her shirt. She often had medical appointments in the middle of the day. “I got to the point where it was like, is this worth my sanity?” she says. “Or can I do something else that makes more sense?”
Eventually, Olson quit her job. She started looking for employment that could offer better flexibility and landed on a position as the Director of Digital Marketing for a startup. “I was very open in the beginning about what I was dealing with,” Olson says. “Most of (the employees) worked from home, and a lot of them had extracurriculars outside of work. I could tell going in that the mood would be a lot better.”
After Olson had settled in at her company, her managers asked for ideas about new businesses they could launch. Based on her personal experience, Olson suggested Chronically Capable, a web application designed to connect chronically ill people with flexible work opportunities “so that no one ever has to decide between their life’s passions and their health again.”
Chronically Capable launched in October 2018, and Olson says they saw immediate interest; approximately 3,000 users have already uploaded resumes. Olson’s priority at the moment is finding remote jobs that offer flexibility, meaningful work, and an open-minded company culture. She works with employers before she puts their jobs on the Chronically Capable list to make sure the companies are ready to take on employees living with chronic conditions. This prep work includes briefing them on how to respond when an employee lets them know about a chronic illness, either during the interview process or later on.
When and how to disclose a chronic illness
Schumer eventually decided to tell her direct manager about her fibromyalgia because she knew that making all of her deadlines would require allyship, especially on days when she woke up with a lot of brain fog. But she doesn’t plan to go to Human Resources about her condition; jobs in her industry are not secure, she says, and she doesn’t feel like she needs special accommodations for her work at this time.
For people who do decide to make an employer aware of their condition, whether it’s via HR or a manager, Joffe has some recommendations based on her own experiences and the experiences of her clients, most of which are backed up by various research studies: “You want to make sure you’re talking about (your illness) in an as matter-of-fact of way as possible,” she says. “You should make it clear that you are in charge of this, even if you don’t feel like you are. You don’t need them to save you.”
Eventually, Olson thinks that she and other advocates will need to lobby Capitol Hill to make politicians aware of necessary workplace provisions for people with chronic illnesses. According to the Centers for Disease Control, 90% of the nation’s $3.3 trillion in annual health care expenditures are spent on people with chronic physical and mental health conditions. This number has motivated Congress to pass several pieces of legislation addressing issues like Health Savings Accounts (HSA) deductibles and better preventative health care for people with chronic illnesses, but there’s nothing yet regarding chronic illnesses in the workplace. Olson hopes to change that.
“I think we need a cultural shift,” she says. “Society needs to understand that more than half of our population will be living with a chronic illness by 2020. People need to wake the hell up.”