Workers with ‘hidden’ diseases or disorders often endure them silently, without the time, treatment, or resources they need. This lack of support hurts employee well-being — and the bottom line. Here’s how employers can help.
By Christina Hernandez Sherwood
One woman faced daily migraine attacks that rendered her unable to work with any lights on. Another, struck by an autoimmune disorder that inflamed her joints, relied on colleagues to carry her briefcase to the courtroom where she worked as an attorney. A third endured back pain so severe that she could barely leave her bed, let alone make it to her desk.
These are snapshots from interviews conducted by the Health Action Alliance, representing countless stories of people facing the Great Disrupters — what we’re calling a group of disorders and diseases that are both chronic and chronically underdiagnosed. For people with these conditions, managing their health while fulfilling their responsibilities in the workforce can require a constant balancing act.
Many people experiencing these disruptive conditions struggle to communicate their challenges to their employers because they fear stigma or discrimination (and often don’t know what workplace benefits are even available to them). As a result, people with chronic conditions often endure them silently, without the time, treatment, or support they need.
Meanwhile, employers experience productivity losses from their workforce without fully understanding what’s happening behind the scenes.
In this six-part series, HAA is shedding light on four of the most disruptive and costly “hidden” health conditions: migraine disease, autoimmune disorders, musculoskeletal disorders, and endometriosis. Each week, we’ll delve deep into one of these Great Disrupters, sharing personal stories and expert interviews.
Here’s an introduction to the Great Disrupters and an overview of the impact they have on employees and businesses.
Migraine disease is a neurological disorder characterized by severe headache attacks that can be accompanied by nausea and sensitivity to light and sound. An estimated 50 million Americans, mostly women, experience migraine attacks, frequently during their prime working years of 25 to 55.
Often, people with migraine delay consulting with a doctor because of the episodic nature of migraine attacks and the common misunderstanding that they are just “bad headaches.” As a result, migraine disease is often undiagnosed and untreated — only about half of people who experience headache disorders are treated by a doctor for their condition.
Migraine attacks can be debilitating, and studies have shown that they can impede a person’s ability to work. Estimates indicate that migraine attacks can reduce overall work productivity by half.
This lost productivity adds up. According to a 1999 study, migraine costs American employers at least $13 billion per year ($24 billion when adjusted for inflation in 2024) due to missed workdays and impaired work function. Employers lose an average of $8,900 per year in excess health care costs and lost productivity for each employee with migraine.
While up to one in five working Americans experience migraine attacks, less than a quarter of U.S. employers believe migraine is serious enough for employees to miss work. Jaime Sanders, a migraine care advocate and former HR professional, knows this first-hand.
Sanders faced daily migraine attacks but was accused of faking her condition. “Anyone can say they have a migraine,” Sanders says. “There’s no way you can prove it. You develop that internalized stigma about it.”
Fortunately, Sanders' manager listened to her and provided a simple accommodation that made a huge difference in her ability to be productive at work. Click here to read Sanders’ story and find out what employers can do to ease the health and business burden of migraine in the workplace.
Musculoskeletal disorders, such as back strain, carpal tunnel and pinched nerve, are sometimes known as “ergonomic injuries.” They happen when repetitive tasks or overexertion cause pain and injury to the body, and can present as undiagnosed aches and pains or more severe, diagnosed conditions.
As many as one in two American adults has a musculoskeletal condition. In 2018, some 272,000 days away from work in the U.S. private sector were attributable to musculoskeletal disorders, according to the Bureau of Labor Statistics.
The most common workplace injury, musculoskeletal disorders cost employers billions annually due to factors including lost productivity, absenteeism, and disability.
Jennifer DeMoss, who was diagnosed with an MSD that affects her joints, recalls days when her disorder left her feeling “paralyzed” with pain. She also recalls trying to work through it for her job at an auto parts store.
“I was hobbling, taking teeny, tiny little steps,” she said. “I could barely bend over, and I’m trying to lift these auto parts. I’m trying so hard to stay employed.”
Working through the pain isn’t uncommon for people with MSDs, but it can be detrimental for employee health — and for the bottom line.
“Discomfort is a distraction,” said Kristine Kohn, an ergonomist for a major utility company. “It pulls your attention away. That can be really challenging, because workers want to give their best. They want to do a good job.”
Click here to read DeMoss’ story and find out what employers can do to alleviate the impact of MSDs in the workplace.
Endometriosis is a painful condition that occurs when tissue similar to the lining of the uterus grows outside the uterus. Some 11% of women are affected. Endometriosis is frequently undiagnosed or misdiagnosed — sometimes for years — because it shares symptoms with many other conditions. Surgery is required to provide a definitive diagnosis.
According to a study on how endometriosis impacts work, women with the condition missed an average of 5.3 hours of work each week due to employee presenteeism, meaning they worked while experiencing symptoms that rendered them less productive. Another hour a week was lost to absenteeism, meaning they missed work altogether.
The study estimates that the business cost of lost productivity due to absenteeism and presenteeism is more than $10,000 per year for each employee with the disease.
It took more than 15 years of intense menstrual pain, headache attacks, and stomach distress before Shireen Saxena discovered she had endometriosis, which requires a laparoscopy to diagnose. However, treatments for the condition are largely limited to pain management and preventing further tissue growth, and Saxena continues to endure high-pain days.
“Half of my brain is always distracted by my pain,” she said. “I’m constantly feeling a stabbing pain around my ovaries and a shooting pain down my leg. I’m always thinking about it.”
Fortunately, her job provides flexibility to help her manage her condition.
“A flexible work environment means that if you’re having a high-pain day and need to turn off your video and put a hot water bottle on your stomach while you’re running a meeting, you can,” she said.
Click here to read Saxena’s story and find out how employers can help workers with endometriosis thrive at work.
Autoimmune disorders such as lupus, rheumatoid arthritis, and chronic fatigue syndrome, occur when the immune system becomes overactive and starts attacking the body’s own cells. (Long COVID was recently classified as an autoimmune disorder.)
Some 50 million Americans have one or more autoimmune disorders, representing roughly 15% of the U.S. workforce. Yet with sometimes confusing symptoms and no single clinical test to identify the disorders, it can take doctors three to four years, on average, to accurately diagnose an autoimmune disorder.
Many of the more than 80 known autoimmune disorders have caused issues in the workplace. A study of psoriasis patients, for instance, found that nearly half of those who worked regularly missed work days due to their condition. A study of some 20,000 patients with Crohn’s disease found they lost more than twice as many work days, on average, as their peers without Crohn’s.
For Olga Lucia Torres, who has lupus, her joint pain began in high school and worsened in college and law school. By the time she took a job as a criminal defense attorney, she was dulling the pain by taking “way more Advil and Tylenol than anybody should.” She elevated her knees. She iced her joints. But she didn’t call out from work.
“We had such a high caseload that you just couldn’t take time off,” Torres said. “You came in with a fever. You came in sick. You came in postpartum. I wanted my career so badly that I just didn’t see a way out.”
Torres eventually found a new job that offered the “humanity” she needed to manage her disorder at work. Click here to read Torres’ story and learn how employers can support workers with autoimmune disorders.
Experts say plenty can be done to make workplaces more supportive of people with these conditions. Throughout this series, they share tips for employers, arming leaders with tactics to deploy against these work and life disruptions.
It’s time we disrupt the Great Disrupters.
Sign up for our newsletter to keep updated on HAA’s latest initiatives, insights and recommendations, and be first to receive new resources and event invitations.
Sign up
.svg)
