An Educator with Migraine, Educating about Migraine at WorkShare
An Educator with Migraine, Educating about Migraine at Work
My first migraine attack happened in my mid-50’s. I was at work, serving as head of an independent elementary school, and I was in the middle of an interview with an exceptional teaching prospect. Suddenly, something frightening happened: my head began to pound, moving zig-zag lines intensified quickly to my left and right, and I experienced a black hole in the middle of my vision. The candidate began to vanish in front of me. She quickly came back into focus, but my vision then switched to being vertically double: she now had two heads, one on top of the other, two sets of lips moving. I nodded as she spoke, trying to appear normal, but internally I panicked.
Was I having a stroke? An aneurysm? Fortunately, my first aura — a term I didn’t know then — abated fairly quickly, leaving a throbbing head in its wake. I quickly wrapped up the interview and called my primary care physician. I assumed I was dying.
Individuals with migraine know the combination of work and migraine can cause major stress. Some struggle with brain fog and concentration when they need to be present and alert. Others, who work with their hands, on ladders or in boats, may suddenly enter a prodrome phase that introduces dangerous clumsiness when they need balance and dexterity. Individuals experience their stomachs churning or find that the faintest light or sound is unbearable. Aura, like the one I had, is disorienting. And many suffer acute and intense pain during migraine, making work of any kind unthinkable.
Contending with migraine is difficult for anyone. The workplace, however, compounds the challenges.
Bosses and co-workers depend on us to get the job done, to be present and engaged, and to add value to the workplace. According to the Migraine Research Foundation, the cost of treatment and lost productivity with migraine in the U.S. alone can reach $36 billion annually — a big number. In my own field of education, for example, a classroom of young children might have a teacher who must leave immediately. That teacher is not easily replaced in an instant, and yet younger kids require an adult presence. Timing and budget for substitute teachers are a real barrier.
There are over 3 million teachers in America, and millions more across the world. Elementary education is primarily a woman’s world; the nationwide percentage of women teaching younger grades in the U.S. hovers close to 90%. Migraine also affects three times as many women as men: 18% vs. 6%. My school had more men than the average, so in this school with 150 employees, about 120 of them were women. If 18% of them experienced migraine, that’s 20 women leading classrooms while living with a debilitating disease.
Universally, most teachers are dedicated individuals; their students and co-workers matter deeply to them. As I look back, I hope that my own personal experiences made me a flexible and understanding administrator. And yet, over my 26-years as a school head, how many teachers came to talk to this caring school head?
How many sought help so they could manage successfully?
The school’s culture was warm and nurturing, yet people were still afraid to expose themselves. They had faced supervisors as well as co-workers with only a rudimentary understanding of migraine, who confused a neurological disease with typical headaches that can usually be controlled with over-the-counter medications. “What’s the big deal? You just have a headache, right?” Others are perplexed when someone needs accommodations, and the tensions among an employer, colleagues and employees with migraine can escalate to an unmanageable level. As a result, too many individuals with migraine employ what is known as presenteeism: working when it is difficult and often hiding their condition. The situation can grow untenable, and those with migraine experience it over and over. For many people with migraine, it doesn’t feel worth it.
Migraine isn’t part of the curriculum in schools of education, law, or business, and when coworkers don’t understand, it falls to the person with migraine to do the educating.
I know exactly why that’s hard. While I tried to be a caring head of school, I also never shared my own struggles with migraine with the faculty. There’s just too much stigma. Those with migraine need to be empowered with accurate diagnoses, we need to learn about the condition, and we need to stay educated and up-to-date. Programs like the Migraine World Summit can foster this understanding. We need to arm ourselves with information in order to explain and educate coworkers and supervisors: migraine is a neurological condition, can be severe, and often requires workplace or job alterations in order to enable employees to do the job they are trained to do — and can do, generally with simple accommodations.
When the COVID pandemic entered the mix, an already hard predicament became explosive.
Stress and anxiety often trigger migraine, and the migraine brain demands regularity; nothing has been regular in the pandemic. An individual with migraine may already struggle to juggle the competing demands of health and work, and now might be home all day with children who are learning remotely but need supervision and assistance — as well as a spouse who demands quiet while working from home.
Teachers, who, for the most part had no training with managing remote classrooms, or began working with students they had never met, hustled to get it right. The stress has often been unbearable for teachers, parents and students. How does a 7-year-old, like my youngest grandchild, manage to sit five days each week in front of a screen in a remote-only classroom? Parents, too, are straining to cope. A woman with migraine wrote to me: “My husband and kids are all home 100% of the time, so that has been tough for me mentally.”
The situation has forced parents, especially mothers, to be educators without formal training, sometimes with little support, and often while managing their own careers.
By far, the largest number of people who have left the workforce during the pandemic have been women. COVID has made an already herculean situation worse.
My successor at my school suddenly had to scramble, working 7-days a week last spring, and then non-stop all summer, without vacation, figuring out what to do: how to hold school safely, how to train educators to teach remotely and yet effectively, how to meet the competing interests of parents who were petrified of their children being in a school setting and those who had to get back to work themselves and demanded that the school care for, and educate, their children. The entire teaching and administrative staff felt exhausted before school even began again in September. Kids dreaded another foray into remote learning.
That’s when so many in the workforce with migraine, especially women, began retreating from their work and giving up prized, hard-won jobs.
It was not just that it was stressful and difficult. It now felt impossible.
Workers, including teachers, can take steps to mitigate these challenges. Workers should:
- Educate bosses and co-workers, as noted above. Again, that requires a clear diagnosis and constant education, as well as the willingness to help de-stigmatize migraine so that honest conversations can happen.
- Be willing to ask for accommodations. Accommodations don’t mean trying to squirm out of work; instead it is about trying to reorganize how you work so that you can get the job done — on time and thoroughly. While the stresses of working remotely are clear, so are the advantages: the ability to manage light and sound, to take needed breaks, to work when you’re at your best. Despite challenges, some have thrived and need to be clear with themselves — and others — about why those successes occurred, and how to re-create them when the pandemic is over.
- Keep a written record. It’s important to remember that migraine may not be on the minds of even the most educated, well-meaning people who don’t struggle with this condition. Keep track of what you said and to whom so you can remind them gently of agreements that have been made.
- Migraine can be a disability: know your rights. Educate yourself about the Americans With Disability Act (ADA) and know how to use the protections it provides for. Find an ally. If you do have to work on-site, identify someone who can drive you home, if needed, or can help you manage your responsibilities if you must stay at work. Make sure supervisors know who this person is and what his or her role will be.
- Know your triggers and solutions. If there are clear patterns of situations, foods, or stressors that bring on your migraine attacks, limit them as much as possible. Sleep, exercise, mindfulness, foods, light and sound should remain consistent and manageable — both at home and at work.
- Migraine is complicated, and so is self-advocacy. However, the more we educate and advocate for ourselves, the more we should be able to fulfill, or even exceed, workplace expectations. It is possible not only to manage our work lives effectively, but to thrive.
- Supervisors and coworkers also have responsibilities. Organizations originally hired all employees for good reasons: their knowledge, expertise, skills and potential. It is essential to remember that they still have all those characteristics despite migraine and the need for accommodations. They may have to work in a different manner, but different neither means worse nor better — just different. As a student of leadership, I know that powerful leaders are those who listen carefully and with empathy, who set high standards, and yet understand that no two workers are alike. The best leaders find ways to maximize every worker’s abilities and promise.
Bruce Shaw has been a lifelong educator in the independent school K-12 world in the U.S., working as a teacher, administrator, consultant and as head of two schools. He deals with migraine as do family members; he is grateful to be able to give back as a volunteer to this important organization.
May 15, 2019
May 15, 2019