Describing how disabling migraine attacks are to someone who doesn’t understand migraine can border on impossible. You know the responses: “It’s only a headache,” “Think positively and your migraines will go away,” “You just need to work harder at having a life and then you’ll feel better.” We live in a culture where illness is something to be triumphed over, where the power of positive thinking is confused with magical thinking, where people are praised for not letting illness slow them down. Debilitating illness is not in our society’s vocabulary.
An illness like migraine has the added obstacle that non-migraineurs think they know what it feels like. Headache and migraine are used as interchangeable synonyms. Because someone knows what a headache feels like, they assume migraine pain feels the same or maybe a little worse. Even those who grasp that head pain is not the only migraine symptom have trouble understanding how debilitating those other symptoms can be and that the pain itself is often excruciating.
Although I’ve always understood that severe head pain is miserable, I haven’t always comprehended how ravaging illness can be. Before migraine became a daily fixture in my life, I had a constant headache that I stubbornly ignored. I’d lose a few nights a week to “bad headaches” and occasionally miss several days (or a week) of school or work with a mysterious illness that caused massive nausea and dizziness, but mostly I pushed through out of sheer will. This was my paradigm of illness (though I didn’t even think of it as illness then, it was just normal) and, despite being a fairly empathic person, I couldn’t understand when other people’s activities were curtailed by illness.
During this time, I went shopping in Mexico with a loved one who had breast cancer. When she declared she was worn out after hours of shopping, I wheedled with her to let me check one more store for the Mexican vanilla I so love to bake with. She was reluctant, but I cajoled and she acquiesced. I knew she was sick and tired, but I had absolutely no idea what she felt like. I only knew that I pushed through pain regularly and assumed anyone else could do it, too.
I cringe now at how I ignored her expressed limits and insisted on getting my way even though she was exhausted. I didn’t invalidate her needs intentionally, but because it was the only thing I knew to do. Everyone assumes other people have the same physical abilities they do. Even if those abilities are diminished, like mine were regularly around the time of that shopping trip, it is difficult to imagine a physical experience that’s not identical our own.
This story comes to mind when I hear of someone whose friends or families say something crass or ignorant about migraine. They simply don’t get it. Putting yourself in someone else’s shoes in always hard. That exercise is doubly difficult when you’re trying to imagine not only an unfamiliar physical experience, but the restrictions that experience imposes. For some people, it’s utterly unfathomable.
Being a writer who has chronic migraine has lead me to a career where I spend most of my time trying to help people “get” that migraine is real, serious, and often debilitating. Migraineurs regularly ask for advice on how to deal with the people in their lives who don’t understand what they endure or who are downright rude. There is no simple way to imbue others with empathy, but acknowledging what you’re going through is a good place to start.
You’ll probably balk at that idea. The stigma of migraine is so great that many migraineurs shroud their illness in secrecy and shame. Until just a few years ago, I tried to hide my experience from everyone, including my husband. I’d write about some of the turmoil on my blog, but even then I was guarded. I never wanted to complain and hated the idea of anyone pitying me or thinking I was weak. To my astonishment, opening up to others has only increased their respect for me. People do not pity me, but are astounded by my strength. In turn, I am amazed by the depths of their compassion.
Being open about migraine is not easy, but it can reap tremendous rewards, both in your personal life and, ultimately, in furthering the general public’s understanding of migraine. You don’t have to let it all hang out; in fact, I recommend revealing a little at a time so you’re not overwhelmed by vulnerability.
If you’re worried about sounding like a complainer, think about ways you can acknowledge the truth without whining. When people ask how I’m doing, I don’t launch into how horrible the last migraine was and that I feel isolated. Instead, I say, “It’s been a hard week” or “I’m still recovering from a terrible migraine,” then gauge their responses. People usually ask what’s going on and I give a little bit of information at a time, letting the questions they ask guide what I say next. No one wants to be hit with an onslaught of complaints, but most are genuinely curious to know what having migraine is like and the people who love you want to know what’s happening with you.
Maybe you’re not comfortable with — or don’t have the physical and emotional energy for — explaining migraine and what it means in your life. If that’s the case, when you come across a post or article that touches you, try sharing it with a short note describing why. Maybe you’ll share with everyone you know on Facebook, or email it to your closest friends, or ask your partner or parent to read it. Every small step is move toward greater understanding.
You don’t have to shout to the world that you have migraine and it is giving you a hard time, but no one can have empathy for you if you don’t allow them a glimpse inside your life. Sharing your tribulations and pain are difficult, but breaking the silence and shedding the shame surrounding migraine are vital to reducing its stigma, both personally and in society in general.
While doing so has sometimes been terrifying and painful, I’m relieved to no longer be trying to hide a major part of my life from everyone around me and have regained some of the control that I thought migraine had wrested away. The resulting stronger faith I have in myself and my own experience, my improved relationships, and the sense of empowerment have been well worth the emotional risk.