One woman's experience with migraine in the workplace sheds light on the personal challenges and hidden costs of this oft-misunderstood disorder, underscoring the need for employer support.
By Christina Hernandez Sherwood
Jaime Sanders’ experience with migraine, a medical condition characterized by severe headache attacks that can be accompanied by nausea and sensitivity to light and sound, began in childhood. By her late 20s, the disease was diagnosed but intractable — she had more headache days per month than non-headache days. At the time, Sanders was working as a human resources support clerk at a hospital. Because of migraine pain, brain fog, and nausea, she struggled with presenteeism at work (being physically present but underperforming).
Pregnant with her third child and unable to take much medication other than over-the-counter pain relievers, Sanders was nearing her breaking point. But despite working in human resources herself, she wasn’t sure what, if any, accommodations were available to her at work. Plus, she was well aware of the stigma surrounding migraine, having been accused in her younger years of faking her migraine attacks. “Anyone can say they have a migraine,” Sanders said. “There’s no way you can prove it. You develop that internalized stigma about it."
Luckily, Sanders has a strong working relationship with her manager, so she took a chance and asked for a simple accommodation: Could she work at her desk with the lights turned off? Her boss agreed, even offering Sanders use of a private office when she needed quiet. These modest accommodations did wonders for Sanders’ work output. “I don’t think I would have been able to make it through my shift [otherwise],” she said.
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. A Migraine in the Workplace Employer Research Study conducted by the Health Action Alliance found that employers are generally unaware of the debilitating impact of migraine. That’s due to a combination of factors, including stigma related to lack of education about the disease and low awareness of how common it is; migraine is the second-leading cause of disability globally.
But research shows it would be worth managers’ time to understand migraine’s hidden toll. Migraine cost American employers at least $13 billion per year in 1999 — that’s $24 billion in today’s dollars — due to missed workdays and impaired work function, according to one study. Employers spend an extra $8,900 per year for each employee with migraine in excess healthcare costs and lost productivity.
“If you’ve got eight people [in your company], chances are you have at least one person who has migraine,” says Carl Cincinnato, executive director of the nonprofit Migraine At Work. “It’s the responsibility of everyone in a leadership position to learn about it.”
Migraine At Work offers resources for employers who want to better understand and support their employees with migraine disease. And HAA has developed a Migraine in the Workplace toolkit, with dedicated guides for employers, managers, workers, HR leaders, and communications professionals.
A few key takeaways from the research:
Beyond education, employers with 15 or more employees are required under the Americans with Disabilities Act to provide reasonable workplace accommodations to people for whom migraine disease substantially limits at least one major life activity.
Though migraine triggers vary from person to person and can change over time, common accommodations include:
That said, migraine attacks can strike even when a person is carefully managing their triggers. That’s why easy, affordable access, through quality health insurance, to appropriate treatment and medication for migraine disease is perhaps the most impactful step employers can take to help their employees with migraine disease.
Sanders says benefits managers can be integral for employees trying to navigate health insurance choices. “They can help guide employees into better options for them, as far as what payer they want,” she said. That guidance could be part of a formalized orientation process for new employees, Sanders suggested, which could help establish a culture that makes team members feel safe to disclose their health challenges. “Ideally, we need to have a personalized HR experience,” she said.
For Sanders, who is now on disability leave due to intractable migraine disease, managing her condition is an ongoing process. She gets Botox and nerve block treatments and continues to pursue other options with headache specialists. Though she gives herself ample time to rest, Sanders has also become an advocate, working with companies and nonprofits to spread the word about migraine disease.
“It’s about leaning into the reality of what my life is and what I can do,” Sanders said. “Having advocacy in my back pocket as a tool to help me turn these lemons into lemonade is really important.”
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This article is the second 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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