Alison LaCoss, a 34-year-old mom of three, knows what it’s like to have her social life upended by migraine. Over the years, she’s called off or changed plans at the last minute due to intense headaches, dizziness, and nausea. That has even included her bachelorette party: Just 20 minutes in, she asked the group to relocate from the beach to her neighborhood pool so she could sit in the shade—and be closer to home in case she had to leave. “My migraine [attacks] tend to isolate me from social gatherings and activities, especially in the spring and summer,” LaCoss tells SELF. (Heat and pollen are two of her biggest triggers.)
Migraine is a neurological disease that often causes people to be especially sensitive to light, noises, and smells. This can sometimes lead them to switch up plans with pals when symptoms hit unexpectedly—or remove themselves from social situations entirely.1 “Folks with migraine [often] feel guilt, shame, and loneliness,” says Steven Baskin, PhD, the co-director of behavioral medicine services at the New England Institute for Neurology and Headache and an attending psychologist at Greenwich Hospital of Yale–New Haven Health. That isolation can also be harmful: Many folks with migraine who step back from friends and family tend to grapple with extra stress and skip out on treatment, which can cause their symptoms to worsen.2
If you feel lonely, know that you’re in good company: Roughly 39 million people in the US live with migraine. “There’s nothing wrong with you for experiencing this,” Anna Holtzman, LMHC, a New York City-based licensed mental health counselor who treats people with chronic pain, tells SELF. Even more reassuring? There are ways to have a social life that won’t force you into uncomfortable, headache-inducing situations. Here’s how to find your people and build a community when you’re living with migraine.
Surround yourself with people you can trust.
Not everyone will understand what you’re going through when you have migraine—especially as an attack is happening. Some people might get frustrated that you’re “ditching” plans again. Unfair judgment from others or feelings of guilt could convince you to avoid future social events entirely, says Holtzman, so it’s essential to surround yourself with people who won’t take offense when you need to prioritize your health.
You can be selective about who you open up to about migraine if that feels most comfortable for you. “You don’t need to share it with everyone in your life, but you do need to find the people you feel safe with,” Holtzman says. Who are the most non-judgmental and caring people—or maybe just the best listeners—in your life? Chances are, those people will respond empathetically to your experience with migraine, Holtzman says.
Sometimes, despite their best intentions, even the most compassionate people might not fully grasp what a migraine attack feels like for you. That’s when a support group can sometimes help. “Other people living with migraine can validate your experience and remind you that you’re not alone—which can help you feel safe to open up again and connect with others,” Holtzman explains. A few online groups she recommends: Journalspeak, The Curable Community, and Tell Me About Your Pain Community. Articulating your pain hopefully won’t feel as daunting when you’re talking to someone who’s experienced it, too—and those same folks might also have tips on how they prioritize time with friends and family.
Be clear about how your loved ones can help.
The more your friends and family understand how migraine impacts you physically and emotionally, the more helpful they can be. Start by making it clear that you might have to abruptly leave or cancel plans if a migraine attack hits. That way, they know you’re leaving to take care of yourself—not because you don’t want their company, Holtzman says.