It’s So Lonely Struggling With Chronic Migraines

I live with chronic migraines. Around 24 days each month, I have symptoms like brain fog, nausea, neck and shoulder pain, and, of course, head pain. I've had migraine attacks since high school, but they came to a stop while I was pregnant with both of my daughters. After I finished breastfeeding, though, they reappeared.

And much like everything else in my life — my postpartum body, my work schedule, my ability to lie on the couch without disruption — my migraines changed. Before kids, my attacks lasted anywhere from four to six hours. The pain was excruciating, stopping me dead in my tracks. I’d retreat to a quiet, dark room, and writhe in pain until the attack ended. Now, after having kids, the pain isn’t as severe… but the tradeoff is that the migraine attacks last days instead of hours. And during that time, the demands of motherhood never waver. Each day I wake up, wondering if I’ll be lucky enough to escape an attack. And most days, by 9am, I’ll have my answer: No.

I don’t talk about my migraine attacks often because I’m not interested in hearing what I could be doing differently to prevent them, or weathering the glib remarks that downplay my condition. Yes, I’m aware stress can be a contributing factor. But do you know how stressful it is to try to not be stressed? No, having sex is not a cure. Yes, I’m also aware that pregnancy can reduce migraine attacks, but I’m not going to have another child for nine months of migraine reduction.

I know I’m not alone. About one in four women will experience a migraine attack in their lifetime. But it’s not something we frequently talk about; I suspect that’s because of the invisibility of the condition and the stigma of living with pain.

Motherhood is overwhelming. But mothering with migraine (or really, any chronic condition) adds a new layer of complexity, one that’s often invisible and lonely. Part of the loneliness comes from how often the condition is misunderstood. It’s not just a bad headache — migraine attacks often include other symptoms like nausea, brain fog, and muscle pain.

And when kids enter the picture, the interrupted sleep, missed mugs of coffee, noise (damn you, Cocomelon), and smells (I’m not gonna provide you with an example on this one), increase the likelihood of more migraine attacks.

Before kids, I had to plan contingencies for my migraine attacks: What happens if I lose vision while I’m at work? What happens if the pain gets so bad I can’t make it through dinner with a friend? But now, post-children, I have two liabilities: my body, and my kids. I have to think ahead to all of the kid-related things that could go wrong before we leave the house, and I need to create a backup plan in case our day is thwarted by a migraine.

When my kid has an extracurricular activity that I simply can't make it to, or when I have to cancel plans, I begin to wonder if my friends and my kids see me as flaky. I begin to wonder if I am flaky. Sometimes I cancel plans not because I have a migraine, but because I have to catch up on everything I couldn’t get to when I did have one.

I am well-versed in mom guilt. But as a mom with migraines, I face additional heaps of guilt. When I use the TV as childcare so I can sit in a silent room, or catch up on a week’s worth of laundry, my mind flashes to memories of the well-child appointment questionnaire: “How many hours of screen time does your child have each day?” Or, “How often does your child eat processed food?” More often than I’d like to admit.

Not only do I have to prove to myself that my pain is worthy of being listened to, but I also have to prove it to my young kids, who are still building their ability to look at other people and take into account that they each have their very own bodies to live in. I have no physical injury that I can show them to say, “Hey, look how much this is bleeding.” When I beg my way out of a rousing game of "the floor is lava," I wonder how large this side of me looms for my daughters. Will they remember that I didn’t dance with them because my head was throbbing, or that some nights dinner was cereal? Will they remember I was only able to get half of the Christmas tree together before I had to retreat to a dark room?

It’s a balancing act, negotiating the needs of my body and the needs of my kids. It seems unfair that they have a mom who has to shoot down so many requests for the sake of her unreliable body. At the same time though, it has provided invaluable lessons for our family: Worthiness is not determined by what we can or can’t accomplish in a day. Pain is often invisible, and we can’t judge other people based on what we don’t know. And we always, no matter what, respect others. Even if — especially if — they have limitations, visible or not.

Laura Onstot writes to maintain her sanity after transitioning from a career as a research nurse to stay-at-home motherhood. In her spare time, she can be found sleeping on the couch while she lets her kids binge-watch TV. She blogs at Nomad’s Land, or you can follow her on Twitter @LauraOnstot.