If there’s one thing people living with migraine want you to know, it’s that migraine attacks are anything but just a bad headache. This is a neurological condition that can have far-reaching consequences across practically all areas of our lives.
Migraine affects roughly one in six adults in the U.S., according to a 2018 study in the journal Headache. In addition to the stereotypical head pain (which actually isn’t always present, by the way), migraine symptoms can manifest as nausea or vomiting, sensitivity to noise and light, vision changes, and so much more. There’s a lot that still isn’t understood about migraine, but we do know that attacks are often triggered by hormonal fluctuations, alcohol, caffeine, certain foods, stress, and inconsistent sleep—among other things. That said, most people with migraine will attest that sometimes an attack will seemingly come out of nowhere—with no obvious trigger to blame.
“Migraine affects people across the continuum of our social interactions, whether it be business, school, social or family lives,” says Noah Rosen, M.D, director of Northwell Headache Center.
I’m unfortunately and acutely aware of this. I was diagnosed with migraine in my mid-twenties and have been struggling to navigate treatment ever since. I’ve missed parties, called in sick to work, and had weeks when I truly believed the pain might never stop—and I’m one of the “lucky ones” who can mostly function at full capacity.
To illustrate just how varied experiences can be across the migraine spectrum, I spoke with 11 patients to hear how their condition impacts their day-to-day life, from their work to their relationships and even their mental health.
Migraine can impact your presence, productivity, and even earning potential at work.
Perhaps you’ve had a coworker who mysteriously disappears from time to time because of migraine. After all, have you ever tried to work through debilitating pain, blurred vision, and unrelenting nausea?
As you might imagine, some of the most common migraine symptoms can make it almost impossible to be present at work during an attack. “Migraine can affect one’s business life in many ways,” says Dr. Rosen.
For some people, their workplace can even be inherently triggering—whether they’re in a stressful office environment or a noisy, chaotic bar. “It is hard to be healthy in an unhealthy environment and, unfortunately, work environments often provide many challenges concerning proper air circulation, [eating] regular meals and hydrating, temperature control, and exposure to stress,” says Dr. Rosen.
People with migraine are often unable to work or function normally during an attack, meaning that even those who are able to remain physically present may be absent in other ways. Dr. Rosen points out that “it’s easy to measure absenteeism—when one isn’t there—but much harder to measure presenteeism—when one is there but not really performing as they should.”
Felicia, a social media director in New York City, says that migraine absolutely affects her professionally. “I have to pause life completely for those 24 to 36 hours,” she says. “Often I have to take a sick day so I can sleep [it] off and take care of my body. I’ve missed or had to reschedule interviews and important events, which when I was a one-woman social media team, meant we were losing out on content and coverage.”
In certain industries, a migraine attack can mean missing out on income. “I have had to skip work frequently because of my migraines,” says Rose, who works in the hospitality industry in Boston. “Because of my industry, it’s very hard to find coverage, and up until very recently we didn’t even have paid sick days…if I have a migraine and am scheduled for a shift that I have to miss, I am losing money.”
Migraine also impacts your personal life—from friendships to romantic relationships.
It’s not uncommon to hear someone with migraine say that they’ve had to miss out on things because of their illness. The unpredictability and all-encompassing nature of a migraine attack means that we sometimes end up disappointing not just ourselves, but also the people close to us.
Migraine “definitely [has] an impact on my personal relationships,” says Rebecca, a consultant in Washington, D.C. “I feel like I’m unreliable when I have to miss yet another event because of a migraine, and I worry that people feel like I’m just making an excuse about why I can’t show up.”
Although most people I spoke to stressed how supportive their friends and family have been, not everyone is prepared to stick by you in both sickness and in health. “I lost many a boyfriend because they didn’t want to take care of me like that and that often,” says Kristine, a poet and adjunct professor in Queens. According to Dr. Rosen, “romantic relations may be threatened when people don’t know how to respond when someone needs hours, or even days, to themselves.”
I know firsthand what it feels like to watch something completely out of your control negatively affect a relationship. An ex-boyfriend once said that he was afraid to marry me because migraine made me seem “sickly,” and he didn’t want to be saddled with my medical bills. We didn’t date for much longer after that.
Parenting with migraine can feel like an impossible feat—particularly for single parents.
Tami, a working mom of two in Ohio, says that “migraines make it difficult to parent the way I would like to. I often find myself irritated more quickly due to my pain levels and not thoroughly enjoying the little things as my children get older.”
Hanna, a lawyer and mother of two in New York City, echoes Tami’s sentiment. “I always feel terrible having to take myself away from my kids,” she says. “My husband is supportive and wants me to rest and feel better when I get one, but because we have young kids, my being out of commission puts a big extra burden on him, and that’s really difficult.”
For single parents with no one there to handle parental responsibilities during an attack, parenting can become a painful juggling act. “It makes it so hard when I have to lie in a dark room with an eye mask and ear plugs for a few hours and can’t go do things,” says Georgia, a clinical psychologist and single mom to a six-year-old daughter. “I try my best and explain I’m not feeling well, but I feel guilty for not being present and [hate that] it makes her worry about me.”
Migraine can even play a role in deciding whether or not to have children in the first place. “This is something I’ve worried about a lot as I approach the age where I’d like to consider having children,” says Marissa in Boston. “I have fears that if I’m suffering from a bad migraine, I wouldn’t be able to be a good parent.” Couple that with the trepidation of passing migraine along to future generations, and the decision can feel heavy. After all, research suggests that migraine may run in families.
These compounding stressors can take a major mental health toll on those with migraine.
It’s not uncommon for people with migraine to also live with mental health conditions. In fact, a 2005 paper in Current Psychiatry Reports notes an association between migraine and diagnoses of depression, anxiety, panic disorder, and bipolar disorder.
“Having any sort of chronic pain like this fucks with your mental health,” says Caitlyn, a florist in Long Beach, California. “I feel more depressed, anxious, and overall unwell.” Caitlyn tells SELF she’s also dealt with suicidal ideation as a result.
In addition to the burden of physical symptoms, navigating care for a chronic illness can feel like a full-time job. “It is exhausting going to doctors and specialists who tell you they don’t know why you have [migraine],” says Meaghan in Tacoma, Washington. Like many, she feels “unseen and unheard” living with an invisible illness.
Not feeling understood is a common theme among those with migraine. “I always feel like I have to prove my pain during migraines, or just suck it up and move along,” says Felicia.
Anyone with migraine knows how impossible it can feel to communicate what an attack feels like to someone lucky enough to have never experienced one. “Absolutely no one understands the severity of a migraine unless they experience one themselves, so there is a small part of me that wonders if people around me think I’m being dramatic,” says Caitlyn. After all, many of us with migraine have encountered a college professor unwilling to excuse a sudden absence or a boss annoyed at the supposed “convenient” timing of a headache, as if there’s ever a “good time” to be hit with a migraine attack.
In addition to questions about the veracity of an attack, many well-meaning friends and loved ones offer advice without realizing just how different a migraine attack is from a regular headache.
“I would love for people who don’t get them to understand that peppermint oil, putting your feet in Epsom salts, and trying cream of tartar do not work,” says Holli, a graduate student and full-time mom in North Carolina. “We have a legitimate, neurological disease. The treatment is not going to be found on Pinterest!”
I will admit that part of me crumbles every time my migraine comes up and someone asks if I’m drinking enough water. As if drinking more water could fix what sinus surgery, elimination diets, 36 monthly injections, and countless prescription medications over a span of eight years still haven’t.
Managing migraine is absolutely possible—but it’s not always easy.
Those with migraine must learn how to cope with the many ways it can affect their lives, and figuring that out can take time. Dr. Rosen stresses how important it is for people with chronic conditions like migraine to “develop good coping strategies over their lifetime.” There is no cure for migraine, just ways to manage it, so “learning to be kind and forgiving to yourself is essential,” he says.
I heard similar sentiments echoed by nearly every person I spoke to for this story, especially those who had been coping with chronic migraine for years. The importance of listening to your body cannot be overstated, and so I’ll leave you with some of the migraine self-care wisdom that was shared with me:
“I’ve learned to look at migraine treatment as a journey in self-care rather than a search for a solution…I can accept that I suffer from migraines, or I can resist that fact and add to my suffering. I choose the former, because I can’t change the fact I get migraines, but I do have control over how I think and act about that.” —Meghan (Denver)
“Never quit advocating for yourself. You are the only one in your body, and only you know how things are affecting you.” —Holli (Jackson, Tennessee)
“Give yourself the grace to look into what happens to you, and take the time for yourself to recover…We have overinvested in busy and underinvested in rest. And right now I am trying to recognize that my migraines shouldn’t be the thing telling me to rest.” —Meaghan (Tacoma, Washington)
“It sometimes feels culturally unacceptable to tap the brakes…None of these things are worth a migraine. Notice the signs, create a boundary, communicate to others, and take care.” —Jenna (New York City)
“I’m a Capricorn—I totally buy into the always-on-the-go, always hustling, always working mentality of capitalism, so migraines have made me stop and rest once a month, which I think I need. I hate that it’s because I’m debilitated from pain, but it’s a time where I must force myself to rest. I’ve tried to take that lesson and find more work-life balance outside of that migraine timeframe.” —Felicia (New York City)
Related:
- We Need to Talk About Migraine Stigma
- The Winding Road to Migraine Treatment
- 9 Ways People Are Getting Migraine Relief These Days