Why Does Migraine Remain So Invisible?
The invisibility of migraine is another "hurt" sufferers endure.
Posted Oct 29, 2020
“I used to get migraines, too.”
“Do you need a Tylenol or something?”
“You look fine; you don’t look sick.”
All of us who suffer with migraine have experienced these and other frustrating comments because our disease is invisible to most. Migraine is the third most prevalent illness in the world and the sixth most disabling illness in the world (Migraine Research Foundation).
How is Migraine an Invisible Illness?
1. Nobody who sees us knows the varied mental and physical aspects of this disease—of the sudden mood changes we fight to contain (tears, rage, and irritability), the confusion (memory loss, word drop, the inability to follow simple directions), the neurological symptoms that make us appear clumsy or spacey (missing a step, going back on ourselves, shudders of electrical energy, dizziness, our senses so heightened that suddenly perfume or cologne, lights, or sound become unbearable), and, then, there’s the overwhelming fatigue.
2. Friends, co-workers, supervisors, and the general public don’t see the side effects from the combination of preventative, maintenance, acute, and rescue medications we are taking—weight gain, nausea, dizziness, sedation, diarrhea, constipation, anxiety, mood changes, memory problems, word drops...
Just last week, I was on my way to an appointment, and my neck was already bothering me. I’d left plenty early to be sure I was on time but drove right past the exit I needed to take. At this point, you might say, “well, your mind was somewhere else,” or “We’ve all done that.”
After getting off at the next exit, I turned in the opposite direction from the facility. Needing to turn around, this time I drove through an intersection, as I tried to figure out where I was. This is not normal behavior; it did strongly suggest, however, that a migraine might well be on the way (and that I should not be driving, obviously).
While waiting for my appointment, I started yawning excessively, despite my nine hours of sleep. I yawned to the point that my TMJ flared. A migraine was on the way. No one noticed. No one except me.
3. People think that if we are functioning by going to work or even to a social function, we must feel OK. How many times have you met that work deadline, made it to your child’s school event, finished that big project, or even attended a gathering that had been on your schedule for weeks, gotten through it, only to have the migraine attack afterwards?
Those with migraine learn coping mechanisms, get through the stressful moments, and, often, pay after. Those with migraine are strong, have learned to live with pain out of necessity; that doesn’t mean they aren’t suffering.
4. Friends, family, and employers imply that if we just tried yoga or meditation, we would reduce your stress, wouldn’t need to take all those medications, and could help ourselves be cured. Surely, stress reduction techniques are valuable and do help migraineurs cope with their stress, but people need to remember that migraine is a complex neurological problem that can’t be cured, that can be coped with and sometimes controlled with a host of avenues—medications, stress relievers, physical therapy, neurostimulation devices, nutrition, good and regular sleep, physical exercise, and hydration.
Why Is Migraine Still Invisible?
Over the last decade, as advancements in research have helped researchers and doctors better understand this disease, it’s finally getting some financial resources and very promising new medications/treatments that have finally been developed. Why then is migraine still so misunderstood, stigmatized, and under-funded?
1. This is a disease with a history associated with women’s hysteria: For centuries, doctors explained migraines as a “woman’s problem” caused by emotional disturbances like hysteria, depression, or stress. “Bizarrely, the recommended cure was marriage” (MacGregor). While that prescription and the so-called “rest cure” (which forced women to rest, without pen and paper, without company, a combination which surely only worsened their conditions) may be far behind us, the misconception that migraines are fueled by a woman’s inability to cope well persists (Klein).
2.Those with migraine become exceptional “maskers.” Chronic invisible pain alters migraine sufferers’ lives in terms of their psychological being, their relationship with others, their work relationships and performance, and, particularly importantly, in terms of their overall quality of life. Ironically, while some people see migraineurs as overly dramatic and weak, unable to handle a “headache,” those who suffer with migraine are stronger than most. We push ourselves to get to work and perform our best, knowing we will suffer the consequences. We expertly “mask” symptoms.
What Are the Effects of Living with an Invisible Illness?
1. Invisible illness is exhausting to explain. Being chronically ill makes everything more difficult. Activities healthy people take for granted—going to work, shopping, cooking, cleaning the house, gardening, keeping appointments, or even basic things like personal hygiene—are often an ordeal. These responsibilities also include issues around social occasions, relationships, and other day-to-day events.
Having to “explain ourselves” because people are not aware, not well educated on this disease, makes us weary and can lead to silence. We often feel defensive and guilty when we look “normal” but are feeling anything but…
2. Most migraine treatment, until recently, was originally developed for other illnesses. The first preventative migraine medication developed specifically to attack and treat migraine was not approved by the FDA until 2018. Before that, medications were used that had been designed for other illnesses—anti-depressants, anti-seizure medications, medications designed to treat angina, and more. What does this tell us about the lack of funding and research focused on understanding and treating this disease?
What can we do to make this debilitating disease less invisible?
1. We can better educate the public and the government about migraine and encourage more doctors to specialize in migraine/headache: Have you ever questioned why you’ve had so much difficulty finding a headache specialist? In 2019 there [were] about 500 certified headache specialists in the U.S. and 39 million sufferers (Migraine Research Foundation ). The medical community has to provide more incentives for medical students to specialize in this area of neurology.
We have several dedicated, expert migraine organizations that do a marvelous job to help patients, scholars, and medical professionals better understand and cope with this illness, but the general public and government funding largely still don’t “get it.”
Migraines have been less investigated than other ailments in terms of research and funding. Despite the enormous economic costs, they continue to receive the least public funding of any neurological illness in Europe.
In the U.S., where migraines affect an estimated 15% of people, the condition received $22m in research funding (£17m) in 2017. Asthma, which affects half as many people, received 13 times that amount ($286m or £218m); diabetes, affecting two-thirds as many people, received 50 times as much ($1.1bn or £84m). (Of course, it’s worth noting that asthma and diabetes are potentially life-threatening conditions).
The world’s leading survey of health conditions across 195 countries found that, in every year from 1990 to 2016, migraine attacks remained the second-largest global contributor to years lived with disability. But compared to their health and economic burden, migraines remain one of the world’s most under-funded diseases (BBC).
Again, in recent years, we are seeing some positive developments in these areas, but we must persist in the fight for more visible attention to migraine.
2. We can reach out to those suffering and really listen about what they experience. If loved ones and co-workers could hear the stories, the genuine experience of the migraine sufferer, they could better know the signs, even could help the migraineur anticipate a migraine, recognizing the triggers and the warning signs which vary so much from individual to individual.
Don’t try to “fix it.” Trust that it’s very likely that what you suggest, the migraineur has already tried.
Be there. Just be there, but don’t make the disease who she is. Because it’s not, it’s a significant part of her. Help make the invisible visible!
Klein, JoAnna. “Women’s Emotions Do Not Cause their Migraines,” New York Times. https://www.nytimes.com/2016/04/07/health/debunking-migraine-misconceptions.html. Accessed 28 October 2020.
MacGregor, Anne. The British Association for the Study of Headaches. Bash.org.uk. Accessed 28 October 2020.
“Why Don’t We Know More About Migraines.” BBC. https://www.bbc.com/future/article/20180702-the-sexist-history-of-migraine-may-affect-research-today. Accessed 26 October 2020.