Are Migraines Disrupting Your Career?
You shouldn't have to choose between your health and your job, and yet migraine patients are often forced to do just that. by Sarah Ellis Health Writer
Editor's Note: HealthCentral is proud to partner with the Global Healthy Living Foundation to bring you this special report.
Ten years ago, Erin Boyle learned the hard way how serious her migraine attacks could be. The 41-year-old medical writer and editor (then in her early 30s) had a severe days-long migraine, tried to push through it, and ended up passing out in the middle of her former office. After a trip to the hospital by ambulance, Boyle realized she needed to change her approach to managing her condition. “I hadn't been taking any medication for my migraine at the time, thinking I could ‘fight’ through them,” she says. “But I clearly couldn't–and I wasn't supporting my own health or my team's needs, either.”
Boyle connected with a migraine specialist who helped her start a medication treatment plan, and luckily, this made a big difference. She also had a sympathetic work environment. “I’ve been lucky because I've had managers and coworkers who also have migraines and got it,” she says. “They understood when I took migraine sick days, when I needed to cut out of dinner early or skip certain food or alcohol during work travel, and when I couldn't talk during long-haul international flights thanks to lack of sleep.”
But not all of the 39 million Americans living with migraine (28 million of those being women) have such a supportive workplace. In fact, migraine can have a huge impact on your ability to succeed and advance in your career.
A new report by the Global Healthy Living Foundation (GHLF) found that 90% of migraine sufferers surveyed have missed up to five days of work in the past month, and up to 25 days in the past year. As many 78% of patients say they are sometimes or often afraid to call in sick or to talk to their supervisor about their condition.
“It’s a real-life neurologic condition, but it’s largely invisible,” says Robert Cowan, M.D., director of the Stanford Headache Clinic and chief of the division of headache medicine at Stanford University in Palo Alto, CA. This results in widespread misconceptions and stigma from coworkers, employers, and the general population. The key to overcoming them? Bringing the truth out of the shadows.
An Invisible—But Very Real—Illness
Nicole Christianson, 33, of Whitefish, MT, wasn’t so lucky when it came to her career. She was working as a traffic controller in a well-paying union job when she began getting debilitating cluster attacks and migraines. Christianson recalls a morning when she got a headache while standing on the highway flagging traffic, and her supervisor told her to get her oxygen (a common treatment for cluster headaches) and come back to her post.
“All I had was a small bottle of oxygen,” she says. “I ended up tucking the bottle of oxygen inside my high-visibility coat, zipping it up so it would stay there, putting a cannula on and pulling a bandana over my nose.” She didn’t want incoming traffic to see that she was on oxygen and had tears in her eyes from the pain. “That was it for me,” she recalls. “I knew that I needed to do something else.”
The truth is that migraine is a disabling condition. “It’s a disorder that can affect the pain system and a variety of different sensory systems,” explains Vincent Martin, M.D., neurologist, president of the National Headache Foundation, and director of Headache and Facial Pain Center at the University of Cincinnati College of Medicine in Ohio. “Most people with migraine cannot function normally, and in the worst-case scenario have to lie down in a dark room” during an attack.
Migraines can be episodic–fewer than 15 headache days per month–or chronic–15 days or more per month. They’re usually brought on by triggers like lack of sleep, bright light, alcohol, exercise, and stress. Here’s a quick rundown of the most common migraine symptoms:
Nausea and vomiting
Light and sound sensitivity
Throbbing pain on one or both sides of the head
Dizziness and fatigue
Vision changes and other sensory disturbances (aura)
The trouble with migraine, like so many other chronic illnesses, is that you can’t always tell when someone you know is having one – especially if they aren’t forthcoming about it. “Stigma is probably the number one sociologic and medical challenge,” Dr. Cowan says. “[People think] it’s a women’s disease, it doesn’t kill anybody, it’s an excuse not to have sex – it’s not taken very seriously.” Beyond being misconstrued as “just a headache,” some people believe migraines simply signal an inability to tolerate “normal” aches and pains. (None of these beliefs are true, of course! For a deeper dive into migraine myths, check out the new “86 Migraine” educational campaign by the Global Healthy Living Foundation.)
For Christianson, the lack of understanding from her supervisor led her to a completely different career. She now works as an independent contractor running a housecleaning business, though migraine-related setbacks have caused her to lose clients over the years.
For a brief period, she offered discounts to clients because she felt ashamed about what she perceived to be a poor quality of work – something she now wishes she hadn’t done to herself. "I would have such an overwhelming sense of guilt or shame that I wouldn’t perform well enough,” she says. “In hindsight, that’s bogus.” It didn’t help that she was trying every treatment option imaginable, from nerve blockers to botox to anti-seizure medications. “You name it, I’ve probably tried it.” Yet it wasn’t providing the relief she needed.
Unfortunately, the landscape around treatment isn’t getting much better. Migraine research is chronically underfunded: The National Institutes of Health expects to spend $27 million on funding for migraine this year–less than $1 per U.S. patient living with migraine.
As a comparison, Dr. Cowan points out the money spent on epilepsy: $203 million dollars this year, for a disease that affects 1.5 million Americans. This isn’t to downplay the importance of epilepsy research, but to show just how much of a gap exists in funding. “Traditionally, diseases that affect women more commonly than men have been disrespected and underfunded,” Dr. Cowan says. “Migraine is about two times more common in women than men.”
Sick Days Don’t Tell the Whole Story
Another reason migraine is invisible in many workplaces? Employees don’t always miss work on their headache days. “A lot of people, because they don’t want to let on what their condition is or are fearful they might lose their job, [will] stay on the job with a migraine,” Dr. Martin says.
This is called presenteeism, and it accounts for an estimated $1.5 trillion in lost revenue for businesses every year. “Most of the cost of migraine to the workplace is invisible because the employees are actually there; they’re just not functioning very well,” Dr. Martin explains. It’s much harder to quantify presenteeism because employees are… well, present. But that doesn’t mean they’re contributing at their full capacity.
It doesn’t help that workplaces can often be triggering environments for migraine attacks. “Many, many migraine patients suffer from triggers like fluorescent lights, stinky-smelling antiseptics in the bathrooms, or workspaces that are highly distractable,” says Dr. Cowan. Shift work, which often puts employees on unreliable sleeping schedules, can also cause migraines.
“There are a lot of cognitive side effects that people can get with migraines,” Dr. Martin explains. “They may not remember particularly well, [and] you can imagine if you’re sensitive to light, staring at a computer isn’t particularly enjoyable.” But if an employee feels uncomfortable speaking to their employer, due to fear or stigma or even of losing their chance at a promotion, they may try to hide their condition. In addition to the 78% of migraine patients surveyed by GHLF who expressed fears of calling in sick, 40% of employees with migraine reported that their workplace rarely or never understands their illness.
The Employer-Employee Understanding Gap
“Employers want to do right by their employees; they just don’t know how,” explains Joseph Coe, Director of Education and Digital Strategy for GHLF. That what the group also surveyed HR professionals to understand their perspective on migraine.
Ninety-five percent of HR participants surveyed by GHLF recognize that migraine affects absenteeism and presenteeism in their workplace. Still, they may not fully understand the condition’s impact. “Though most HR participants reported offering flexible work schedules for their employees–such as working from home, working part-time, or working hours other than the standard nine-to-five–nearly half believed an employee can still work with a migraine attack,” Coe says. No wonder why employees may be reticent to call out of work on a bad headache day.
There’s also the issue of health insurance coverage. The GHLF report found that 35% of patients with private insurance (often purchased through their employer) have experienced blocks to getting the migraine treatment they want. Plans often use step therapy, which requires patients to try less expensive options first before working their way to pricier ones, and prior authorization, which may require patients to wait more than a week for medication to be approved.
Two-thirds of employers will cover the costs if an employee’s medication coverage is denied–but that still leaves many employees paying out of pocket for copay costs. Fifty-one percent of migraine patients reported paying up to $50 per month for their migraine medications, and an additional 30% reported paying up to $100 per month.
Christianson has finally found relief in alternative treatments like bioidentical hormone replacement therapy, but she has to pay completely out-of-pocket. “I’m basically going to work to pay for a therapy that allows me to go to work,” she says. “I feel like I’m in this cycle go to work, make money so you can pay for therapy, then you can go to work. I’m stuck in this revolving door.”
The burden should lie on the employer (when possible) to make sure their employees are well-provided for. “Employers have tremendous power and opportunity to negotiate insurance contracts, and to really push the positive agenda of making sure people are taken care of,” Coe explains. Here’s what employers should look for when designing a benefits package, and what employees should look for in choosing a private plan:
Does the insurance plan cover migraine?
Will it be an obstacle for employees to get the treatment they need–due to step therapy, prior authorization, or expensive copays?
Will the employer cover medication costs that the insurance company denies?
Addressing these issues will be a win-win for employers and employees. “These are all things that take energy away from someone being able to work,” Coe says. “If I have to fight my insurance company to get the therapy prescribed for me, then I’m not doing something else.”
Ending the Stigma
To better support and empower employees with migraine, there will need to be a shift in education and attitudes toward chronic illness. “We need to create a culture where people are believed,” Coe says, “where we trust the people we work with, and we provide and leverage our resources to make the best care possible.”
The National Headache Foundation has launched a new program called WorkMigraine, which consists of online modules for employers and employees to better understand the impact of migraine at work and the financial benefits of treating it. “We would welcome any corporations that want to get involved,” Dr. Martin says. “We’re hoping to have a huge uptake of this.” Contact the National Headache Foundation for more information on getting your workplace involved.
For employers, education is key to better understanding. “The biggest thing is for the employer to understand that people with migraine are not missing work because they’re going out shopping,” Dr. Martin says. “They’ve got a disease called migraine that is causing intermittent, unpredictable absences from work.” Consider providing employees with flexible work hours or the option to work from home – or at least from a place with low noise and fluorescent light.
People with migraine, for their part, should be confident to be own advocates. “A lot of people with migraine actually self-stigmatize,” Dr. Cowan says. “They don’t say anything because they don’t want to be thought of as that person with migraine [or] that person who can’t perform.” Help your employer understand that you can make up your workload – even if it means working different hours or setting up an office at home.
Here are some tips for having that conversation:
Assess your comfort level with your employer. "Take an assessment of your job security and your ability to advocate within that structure,” Coe suggests. It is illegal to fire someone for having a disability, but some workplaces are more understanding than others. “Unfortunately, we live in a society that doesn’t value people with chronic disease, so it’s something I would be very careful in talking about,” he notes. If you're worried about negative repercussions, you might want to seek out an external migraine network to provide support and specific advice. Two options are the American Migraine Foundation’s Move Against Migraine Facebook group or Global Healthy Living Foundation’s 50-State Network for advocates.
Make concrete, practical suggestions for adaptations that can help you. Be specific in your request. “Commonsense adaptations can help,” Coe says. If you work in an industry where working from home is a possibility, ask for specific accommodations there–Do you want to work from home a specific number of days per week? Change your hourly schedule to a different time of day? Maybe it’s as simple as reducing the fluorescent light in your office or moving your desk to a window. This will also help you navigate the stress of those days when you really can’t get much done because of your migraine. Now, you have a clear plan of action for how to make up whatever work you missed.
Share resources for your employer to learn about migraine. Chances are, your employer wants to learn and understand – after all, your productivity and happiness ultimately benefits their bottom line! “Employers might not understand the impact that migraine disease has on folks, particularly for employees that are good at hiding it,” Coe says. Explain how migraine limits you, and affirm that you want to be a productive part of your workplace team. If you’re comfortable, share resources like the 86 Migraine campaign or WorkMigraine program with your employer or HR representative.
Be firm and confident, but also be kind. “Part of it is empathy building with your employer,” Coe notes. Come in ready with ideas about how to improve the lives of employees with migraine. If you’re in a position of power within your organization, now is the time to use that leverage for good. “Look at policies directly that help people come forward and talk about their chronic disease struggles like migraine,” he says – which can help build a more supportive workplace environment for everyone.
Know Your ADA Rights
Legally, patients whose migraines affect their ability to perform at work qualify for accommodations under the Americans with Disabilities Act. “As a patient with migraine, you are an American with disabilities, and you have a number of rights,” Dr. Cowan says. “That is, you have the right to accommodations for performance and environment in your workplace, you have a right not to be discriminated against because you have migraine.” You cannot be fired or denied a promotion because of your condition, and you are entitled to a modified environment, work schedule, or other feasible accommodation to help you do your job. When you need to take a day off for a migraine, it shouldn’t cut into your PTO. “It’s a sick day, it’s not a vacation day,” Dr. Cowan emphasizes. “You should be taken seriously.”
We can all play a role in making workplaces better for people with migraine. Erin Boyle, whose hospital scare years ago led her to take better care of herself, has spent the rest of her career helping to educate others she works with. “When I became a manager myself and spoke to other managers who didn't personally experience migraines or know anyone close to them who did, I made sure to bring awareness on how migraines were real,” she says. “They are more than 'just a headache’ … but they're an invisible illness, and so easy to discount if you don't know how debilitating they can be.”
Christianson is grateful for the support she has found in therapy, migraine advocacy groups, and personal journaling. “If you have an inkling that something is off and you’re not being heard … lean into that. We know our bodies best,” she says. It’s not all in your head–you deserve the support you need to succeed.
GHLF Report: Global Healthy Living Foundation. (2020.) “Migraine in the Workplace: What Employers and Employees Need to Know.”
Migraine Statistics: Migraine Research Foundation. (n.d.) “Raising Money For Migraine Research.” migraineresearchfoundation.org/about-migraine/migraine-facts/
Migraine Symptoms: American Headache Society. (n.d.) “Migraine.” americanheadachesociety.org/wp-content/uploads/2019/03/GENERALMIGRIANE_11x14.pdf
Migraine Worldwide Prevalence: The Lancet. (2017.) “Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016.” thelancet.com/journals/lancet/article/PIIS0140-6736(17)32154-2/fulltext
Migraine Funding U.S.: National Institutes of Health. (2020.) “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).” report.nih.gov/categorical_spending.aspx
ADA Accommodations for Migraines: Job Accommodation Network. (n.d.) “Migraines.” askjan.org/disabilities/Migraines.cfm
ADA Rights: U.S. Department of Labor. (n.d.) “Employee Rights.” dol.gov/general/topic/disability/employeerights