I can almost count the people I know in real life who have migraine on one hand. A cousin, an aunt, a neighbor, my father-in-law, a mom of my son’s friend, and a fellow volunteer board member. Given the fact that more than 36 million Americans have migraine, it’s striking that I only personally know a handful of people who are living with the condition. Yet I’m hardly alone in this dynamic. Even though migraine is incredibly common, we don’t generally encounter migraineurs in our everyday lives, at least knowingly. So, when we find someone who is managing life with migraine, it can be an incredibly relieving and affirming experience.
Why is it that so few of us are connected in real life? Primarily because the condition is so isolating. Migraine keeps us at home, in the dark, staying quiet. We generally are not out and about shouting from the rooftops about the challenges we face. Instead, we are busy responding to pain, managing related symptoms, and doing our best to take care of the rest of our responsibilities. We are also often sidelined from our careers, and absent from social and family gatherings. So, the opportunities to connect in person are few and far between. Some people with other types of medical conditions may rely on support groups, but with regular meeting times, the difficulty in attending such groups is obvious for migraineurs.
It is easy to feel alone and misunderstood as we maneuver through life with migraine. If we know no one else with migraine like us, it can be easy to feel that no one really comprehends what we face. Even the most compassionate person in the world can’t really grasp what migraine is like if they’ve never had one.
Not on my worst enemy
My husband is one of those people who is brilliantly and endlessly compassionate but is lucky enough to have never once even had a headache in his life. I’ve wondered if his experience of an attack would help to deepen his understanding of what I’m up against, but I honestly would never wish the condition or the pain that comes with it on my worst enemy, much less my loving husband.
A beacon of light
At a recent large gathering of friends and family, I met a woman who lives with chronic migraine. It was a wonder that we both had made it to the annual event (one that I have missed countless times before due to chronic migraine). Although we talked about our lives, there was no need to go into great detail about the specific ways migraine is hampering how we live. It was enough just to know that we are facing the same challenge. We noted that we’d found each other in the quietest corner of the room. Life with migraine can bring with it the constant sense that we must educate others about the condition – or be ready to explain why we aren’t working. So often we must defend ourselves against an insensitive comment or question. It’s a profound relief to find someone who “gets it” without having to explain a thing.
Something very special occurs when I encounter someone who lives with migraine. Whether online or in real life, there is an immediate connection and understanding. Each migraineur I meet is very special to me. I hold them near and dear to my heart because I know what they are up against and they accept and understand who and where I am. When we spend so much time feeling isolated and alone, these connections are especially nourishing and important.
Do you know others in your life who have migraine? Has connecting with others been a helpful experience?