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Breaking the Migraine Stigma: How to Advocate for Yourself at Work

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migraines

Imagine you’re in the middle of a crucial work meeting when suddenly, a throbbing headache threatens to derail your productivity. This isn’t a rare occurrence for millions of people worldwide, however, it is a regular struggle. Migraine, a debilitating neurological condition, often clashes with the demands of professional life, creating unique challenges that are rarely discussed.

Prevalence and Impact of Migraine

A migraine is more than just a severe headache; it is a complex neurological condition with a range of symptoms that can severely impact daily functioning. According to Dr. Dawn Buse, Clinical Professor of Neurology at Albert Einstein College of Medicine in New York City, fellow of the American Headache Society, and Board Member of the Headache Cooperative of the Pacific, approximately 18 percent of adult American women and six percent of adult men suffer from migraine, translating to about 12 percent of all adults. These statistics underscore the widespread nature of this condition.

“It starts in childhood and increases during adolescence. An attack can last multiple days and has multiple phases, including the pre-headache phase with symptoms like cognitive impairment, neck pain, and fatigue,” Dr. Buse shares. 

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Phases and Symptoms of Migraine

According to Dr. Buse, migraine typically progresses through four phases:

  1. Prodrome Phase: This phase includes symptoms such as cognitive impairment, neck pain, fatigue, and mood changes.
  2. Aura Phase: About 25 percent of migraine sufferers experience aura, characterized by visual disturbances, sensory changes, and speech difficulties.
  3. Headache Phase: This phase involves severe head pain, often accompanied by sensitivity to light, sound, and smells.
  4. Postdrome Phase: Known as the “migraine hangover”, this phase includes continued fatigue, cognitive impairment, and mood changes.

RELATED: Traveling with Migraine: 5 Essential Tips to Make Your Journey Easier

Migraine in the Workplace

Migraine poses significant challenges in professional settings. Individuals with migraine often face difficulties in maintaining productivity and fulfilling job responsibilities due to the severe and unpredictable nature of their symptoms. With nearly 40 million Americans impacted by migraine, including 14.45 percent of Black Americans, it is clear that many have struggled to get through workdays while experiencing a migraine.

“Functioning at home, work, or social events becomes extremely difficult. In the workplace, the impact is dramatic. It’s hard to function during and between attacks due to lingering symptoms like light sensitivity and cognitive impairment,” Dr. Buse adds. “Some people even experience interictal impairment, where symptoms persist between attacks, affecting their ability to perform their job. This is especially challenging for jobs that require constant focus or physical activity, like flight attendants, schoolteachers, firefighters, police officers, or sanitation workers.”

“In many careers, limited sick leave and the fear of letting down colleagues or missing out on promotions add to the stress. People may avoid taking on more responsibility or pursuing further education due to their condition,” Dr. Buse notes. “Our Chronic Migraine Epidemiology and Outcomes (CaMEO) study found that migraines affect not only the individual but also their family. Partners and children worry about finances and stability, and there’s a lot of pride and identity tied to careers. For some, the impact of migraines can lead to leaving a career they worked hard for, causing grief and sadness.”

Over 113 million workdays are lost each year due to migraine and its symptoms.

However, under the Americans with Disabilities Act (ADA), individuals with migraine are entitled to reasonable workplace accommodations. These may include:

  • Implementing no-scent policies.
  • Allowing the use of therapeutic glasses to reduce photophobia.
  • Providing flexible work hours or remote work options.
  • Creating quiet, dark spaces for recovery during migraine attacks.

“You have every right to have accommodations so that you can achieve at work and school just like everyone else. I want people to have that confidence. They have the right to be there, the right to help, and accommodations and support. Talk to your doctor about getting the right diagnosis and treatments. With the best-personalized treatment plan, you can do well at work and school, take on other responsibilities, and pursue the types of jobs you want,” Dr. Buse shares.

Addressing Stigma

Stigma remains a significant barrier for individuals with migraine. Many sufferers feel guilty or embarrassed about their condition, fearing judgment from colleagues and supervisors. This stigma can lead to underreporting and inadequate management of migraine.

“This type of stigma is very common. In our OVERCOME study of 60,000 people with migraine, we found that about a third of people worried that others thought they were using migraines to get out of something. Many people do not realize how debilitating, difficult, and serious migraine attacks can be. These are very common types of stigma. Part of addressing this starts with self-efficacy and self-confidence, knowing that you have every right to accommodations,” Dr. Buse adds.

Dr. Buse also advocates for increased public and professional education about migraine. Educating both the general public and healthcare providers about the serious and debilitating nature of migraine can foster a more supportive and understanding environment.

“I don’t want people to feel embarrassed, guilty, or unworthy. I want them to feel empowered to ask for their legal rights to accommodations,” Dr. Buse says.

The Role of Research and Advocacy

Ongoing research and advocacy are crucial in addressing the challenges faced by individuals with migraine. Initiatives like the Migraine Career Catalyst Award, sponsored by AbbVie, aim to support professional development for those living with migraine. 

“It’s the first contest designed to support careers and professional development for people living with migraine. Through up to 20 grants of $2,500 each, individuals can choose how to use these funds to support their career professional development or networking opportunities. This is a great opportunity for people to feel empowered and think about what they would like to do, learn, or change to succeed at work,” Dr. Buse notes.

Importance of Inclusive Clinical Trials

Diversity in clinical trials is another critical aspect of improving migraine management. Inclusive trials can help develop treatments that are effective across different demographics, addressing health disparities and ensuring equitable access to care.

“I had the honor to participate with AbbVie on a diversity and equity initiative, ensuring clinical trials include people representative of various races and ethnicities. This initiative also brings clinical trials to locations that didn’t always have them,” Dr. Buse says.

“Two years ago, we did a survey in the U.S. and five other countries, asking about stigma. We now have international stigma data, helping us see where the problems are and how to address these needs. Public education is crucial, letting people know migraine is real, common, and a neurologic disease with debilitating symptoms. Educating healthcare professionals is also essential, as only about half of the 40 million Americans with migraine talk to doctors about it. Among those who do consult, about 80 percent talk to primary care professionals and frontline providers. Through continuing medical education from the American Headache Society and the National Headache Foundation, we aim to make healthcare professionals aware of migraine and how to screen for it,” Dr. Buse adds.

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