By Christina Hernandez Sherwood‍‍

For Olga Lucia Torres, the joint pain began in high school and worsened in college. It continued, without diagnosis, through law school. 

A daughter of immigrant parents, Torres said she was brushed off by medical providers, who suggested her pain was the result of her stressful workload. "I would go to doctors, and I was told that I was doing too much," she said. "I was not able to hack it, and that was causing joint pain."

By the time she took a job as a criminal defense attorney in New York, Torres said 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.”

Colleagues helped when they could — carrying a briefcase when Torres’ joints ached or subbing in for her in court — but office culture led her to feel guilty about taking off, like she was causing her incarcerated clients to suffer. “It was a horrible place to work with a chronic disease,” Torres said. “I wanted my career so badly that I just didn’t see a way out.”

Finally, in 1998, Torres was diagnosed with lupus. She was put on steroids and, more recently, a biologic to manage her joint pain. Torres’ lupus diagnosis was the beginning of a torrent of autoimmune diagnoses that topped out at six separate disorders. Eventually, she left law altogether.

‍Dozens of Disorders‍

Autoimmune disorders like lupus occur when the immune system becomes overactive and starts attacking the body’s own cells. There are more than 80 known autoimmune disorders, including rheumatoid arthritis, chronic fatigue syndrome, and, more recently, long COVID. 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.

Some 50 million Americans have one or more autoimmune disorders, representing roughly 15% of the U.S. workforce. Of people diagnosed with one autoimmune disorder, about 25% go on to develop additional autoimmune conditions, as Torres did. And women are much more susceptible to autoimmune diseases; estimates indicate that between 70% and 80% of diagnoses are in women.

Many 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.

Autoimmune disorders are more pervasive than many people realize, said Tamarah Duperval-Brownlee, chief health officer at Accenture. “They can affect every system of our body from neurological to skin,” she said. “It’s likely a colleague may be affected.”

‍How To Take Action

Employers can regularly review their medical plans and which benefits employees are using the most to get an understanding of what employees need and how to serve them better, Duperval-Brownlee said. “What are your people affected by?” she said. “Pay attention to that. There is information that can be revelatory in terms of what people may be experiencing.”

For example, Accenture added a gastrointestinal health benefit in response to employee needs, Duperval-Brownlee said. “It’s a great [supplement] to what they may be getting from the medical side,” she said. “Those are different types of benefits that can be explored to help people.”

In addition to providing affordable, quality medical coverage, companies can help people with autoimmune diseases by instituting flexible time off policies, providing accommodations specific to employees’ needs, and fostering a culture where people feel safe to seek support.

“If you care about work, if you want to contribute to the success of your organization, make the informed, intentional investment in your people,” she said.

Though Torres works for herself now, as a freelance writer, public speaker, and patient advocate, she encourages employers to have an open-door policy when it comes to health. “They need to listen to the employee,” she said. “It’s hard enough to be diagnosed and learn to grapple with this disease.”

Torres’ latest role, as a Narrative Medicine lecturer at Columbia University, has done wonders for her health. “I miss the adrenaline of my old job,” she said, “but the humanity of this job can’t even compare.”

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‍This article is the fourth installment in the Health Action Alliance’s six-part series on the Great Disrupters — a group of costly and “hidden” disorders and diseases that are both chronic and chronically under-diagnosed. Each week, we delve into one of these Great Disrupters, sharing personal stories and expert interviews.

Keep up with the full series here.

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