We Really Need to Talk About Migraines
The disorder disables millions yet lives in the shadows of stigma. And no, it’s not just a “woman’s problem.”
Most people who know me would never suspect that I’ve had migraine headaches for more than 35 years.
You might not realize that your friend or coworker or next-door neighbor also suffers from this common, often debilitating neurological condition. One in five US adult women and 10% of men suffer migraine headaches, according to the Coalition for Headache and Migraine Patients. In fact, migraines are ranked second among all causes of disability in the general population. The American Migraine Foundation reports that migraines are the third most common disease in the world, and estimate that 39 million Americans and 147 million people worldwide suffer from migraines. Yet, only 5% receive an accurate diagnosis or appropriate treatment.
Migraines remain an “invisible” chronic illness. Many migraineurs (a term used to describe people who experience chronic migraines) often keep quiet about their pain, whether due to concerns about stigma or their own misdirected feelings of shame. Some even blame themselves. If only I could handle my stress better. Why couldn’t I have just avoided that piece of chocolate or glass of wine?
Not “just a headache”
Migraines cause painful headaches, but they are much more than that. This complex neurological disease reverberates throughout the body, often affecting balance, coordination, digestion, and cognitive functioning. Some migraine attacks are preceded by an “aura” or visual disturbance, such as flashing lights or blind spots. But most attacks arise without warning or with easily overlooked signs, such as a stiff neck or food cravings.
Migraineurs often describe a range of unusual symptoms that occur during an attack, such as dizziness, a stuffy nose, bloodshot eyes, or even increased urination. Bright lights, strong odors, and loud noises add insult to injury.
Many people feel exhausted or suffer from “brain fog” after an attack; they don’t think clearly, have that “tip-of-the-tongue” word-finding challenge, and misplace their keys for the hundredth time.
The toll of migraines
Migraines affect every area of life. In the American Migraine Foundation survey, 90% of those who have them disclosed that migraines interfered with their social lives, education, or career.
Activities that might trigger a migraine are curtailed, such as late night ventures (sleep disruption), a long day at the beach (too much sun exposure), or the occasional glass of wine (a common food trigger). Household tasks are reduced to the bare minimum. Social engagements are canceled. Major life events are missed. In addition to the pain, disabling cognitive symptoms that arise can range from difficulty handling complex mental tasks to impaired motor skills. Driving or even cycling to work is a risky venture.
Most troubling, though, is when the frequency or intensity of migraine attacks become chronic and disabling, resulting in an inability to function in daily life, and a depressing disengagement from activities that might otherwise bring joy and satisfaction.
Migraines in the workplace
As you might expect, migraineurs struggle with diminished productivity and increased absences from work. Since migraines are frequently mislabeled as “just a headache,” migraineurs may be viewed as complainers and are expected to drag themselves through their workday.
According to an article in the Harvard Business Review, 4.4 work days on average are missed due to migraines, and an additional 11.4 days result in decreased productivity. These numbers are most likely an underrepresentation, since many migraineurs hide their condition from employers. Those with chronic migraines (occurring more than eight days a month) may curtail their ambitions, leave careers that are too demanding, or go on disability.
Finding treatments that work
Although a variety of promising new treatments are available, migraine research has been underfunded and more options are needed. (See some of the sites listed below for the latest treatment strategies.)
Most research in the past focused on correlational studies that identified potential environmental triggers or co-occurring medical conditions. More recent studies have identified genetic markers and chemicals within the nervous system that can be targeted (see this article for more information).
Each migraine sufferer is different, though, so what causes (or treats) migraine in one person may not generalize to the next. Identifying preventative treatments and strategies and avoiding environmental triggers are especially helpful tools, although some triggers cannot be avoided, such as hormonal fluctuations or changes in barometric pressure.
The burden of stigma
Migraineurs are often portrayed as complainers who cannot manage stress. (And yes, although stress can be one of many triggers, migraine disorders are not caused by stress.) Migraineurs feel stigmatized because of their disease, and this perception of stigma is even greater among those with more frequent migraines.
Since women are three times more likely than men to have migraines, their suffering is often marginalized as a “women’s problem.” When particularly painful attacks lead to an emergency room visit, migraineurs may be viewed as drug-seekers, their credibility questioned, their pain left untreated.
Many migraineurs, like myself, learn to disguise, minimize, and even hide their symptoms from others. A survey of migraineurs by the Migraine Trust in the UK reported that 43% felt that their employers did not believe them when they were absent due to a migraine, and 34% claimed that they were discriminated against at work. Even more disturbing, many felt that their primary care providers either minimized their concerns or could not help them.
“They report having their pain dismissed, being told nothing can be done for them and waiting years to access treatments,” the report concludes. “As a result, many are left feeling depressed, frustrated and unable to cope.”
One person’s story
Like most migraine sufferers, I have learned to pace myself, identify situational triggers, and search for solutions. Routine activities require a careful consideration of their migraine-triggering potential. You won’t catch me out in bright sunlight without a hat and sunglasses. You won’t find me traveling to exotic places where I cannot be sure of meals or other conditions. My first thought when perusing a restaurant menu is not the price or what looks delicious; I scan for hidden food triggers and what I must avoid.
Even though I have found treatments that make life with migraines manageable, it takes a toll.
I am never as mentally sharp during a migraine attack as when I am not symptomatic. I can chat about a recent film — the plot, themes, and characters — but not remember the title. My eyes might seem puffy, but the culprit could be mistaken for seasonal allergies. I might appear “normal,” but I am far from it.
I have learned to identify my triggers and try to avoid them. Unfortunately, migraine triggers seem to be everywhere: bright sunshine, pungent odors, sleep disruptions, or weather changes, among others. Certain foods are automatic triggers — not just the usual suspects, like alcohol or food additives — but nutritious foods like garlic, onions, or yogurt. Leftovers can be a problem. Exercise needs to be carefully paced. Time outdoors, overstimulation, and intense emotions all can create a problem.
In my search for remedies, I have spent countless hours and more money than I care to admit — money that could have been saved for retirement or spent on a kitchen remodeling or even some amazing vacations. I have tried a range of traditional Western medicine and alternative medicine approaches, along with physical therapy, meditation, nutritional supplements, neuromodulating devices, and even Botox, which left me with fewer forehead wrinkles (a nice perk!) but worse migraine attacks over time.
Migraines are tricky. Just when you think you have stumbled upon a cure, they find a workaround and return with a vengeance.
Yet, I feel fortunate.
Unlike some migraineurs, I am not totally disabled. I have maintained my career, raised a family, and acquired wonderful friendships. I know how to ward off most migraine attacks, usually function at almost full speed, and have rarely needed to lock myself in a dark room with an ice pack. I live in a major metropolitan area with access to cutting-edge treatments, amazing headache specialists/neurologists, and alternative medicine practitioners. These days, I incorporate a range of traditional and non-traditional strategies into my prevention and treatment protocol. While these strategies seem to help, I retain some skepticism, since migraines can outsmart even the best treatments.
What can you do to help?
It is very likely that you know someone who suffers from this disabling neurological condition. Migraines are not just a headache, or a women’s problem, or an excuse to avoid responsibility. Resist the urge to disparage, shame, criticize, or offer unfounded advice you read online. Instead, ask the person what they are going through, ask how to help, and curtail your own frustration or disappointment when they cannot live up to your expectations (or their own).
If your coworker or employee has migraines, speak with them about accommodations, if possible, or at least some modifications in their work schedule. These articles from Migraine Again and Migraine at Work offer tips for employers that may help.
If a loved one prone to migraines is suffering from depression or feelings of hopelessness, consider accompanying them to a local migraine support group or encourage them to seek counseling with a licensed mental health professional. You can learn more about this condition and find support options through some of the sites listed below.
Migraines affect millions of people, including your family members, friends, co-workers, and, perhaps, your neighbor next door. Research is underfunded, so every donation and every advocacy effort matters. The advocacy group Miles for Migraine encourages people to challenge stigma or discrimination, build a supportive community, and advocate for increased research funding. Please visit some of the websites listed below for your own support and understanding, and consider getting involved so that future generations will be less affected by this widespread disabling condition.