“I can’t go.”
My husband nodded. He offered no words of support, but grabbed his cell phone and started texting friends in an effort to salvage his evening. We both knew the drill because it wasn’t the first time I’d cancelled. My head boiling, I went back to our bedroom. My debilitating condition had changed me, and my migraines have changed us.
Fifteen years ago when I said “I do,” I was healthy. I could take long walks in the sunshine and laugh at my husband’s jokes without pain. But since three years into our marriage, my chronic migraines have kept me locked in a body that experiences discomfort on a daily basis. I spend my waking hours in a fearful haze, worried that blinking my eyes will trigger an agony that’s akin to barbecuing my brain. A migraine is no mere headache, and my migraines keep me disengaged from myself and from my husband.
When I had my first migraine I couldn’t understand how my body could conjure that amount of suffering without killing me. If I’d removed my eyeballs, maybe the grilling in my head would’ve stopped. Meanwhile, the tiniest of movements increased my nausea like I was riding a Ferris Wheel upside down and backward.
My husband helped me through that first one by keeping me hydrated and giving me crackers to munch. He reassured me that everyone gets a migraine once in their lives. So I dismissed it as a fluke and went on living my life, forgetting my sunglasses and indulging in glasses of wine. I hadn’t learned to be afraid of the triggers.
“My debilitating condition had changed me, and my migraines have changed us.”
“We have dinner plans tomorrow. Should I get a backup date?” my husband teased.
Almost overnight, my migraines became infamous for ruining plans. There were times my hubby could have sent me postcards from our vacations, I spent so much time during them in bed. No amount of yoga, over-the-counter remedies or positive affirmations cured my agony.
My whole life I’d been healthy, so we assumed this was a fixable phase. My husband stayed patient with me and became my personal chef and chauffeur when I couldn’t function. Together, we waited for my condition to pass. It didn’t.
Wanting to maintain my life as before, I tried to push through my head pain, but that only increased my suffering. On the verge of a migraine nine years ago, I tried to go with my husband to a concert. I vomited on my shoes. I started staying home more.
Six months later, lying in bed became my only comfort. I spent a great deal of time doing my best impression of a sloth. My love was there holding my hand in the dark of our bedroom until each migraine started lasting a full 28 hours. The tenderness he’d shown lost its foothold as my condition became ordinary.
My false belief that this was just a curious passing chapter in my life kept me in and out of bed two years too long. I heard a new distance in my husband’s voice. He simply couldn’t keep up with all the disappointments I was serving him, just like I couldn’t keep up with my migraines.
I fell into the habit of apologising for my disorder like it was an embarrassing, boundary-free friend. It was clear that my migraines were taking over my body and my marriage, so I decided to seek professional help for my head, hoping it might help out both of us.
“On the verge of a migraine nine years ago, I tried to go with my husband to a concert. I vomited on my shoes. I started staying home more.”
Staring at the vibrant pink flowers in front of my neurologist’s office, I wondered if I’d ever feel that bright inside again. After four years of different doctors and hit-and-miss treatments, I felt more like a faded peach, but I was finally learning that my fluctuating hormones were the underlying cause. Luckily, there were certain protocols and medicines that could assist me.
My latest doctor had been clear, though, that this type of migraine was tricky to treat. There might be a lot of trial and error — possibly with little success. Still, he reassured me that my migraines were beyond my power to fix alone, and we would try all we could.
Meeting with the doctor gave me a new kind of relief. It was a freeing calm knowing that even though my migraines were mine, they weren’t my fault. I accepted the news that each new prescription might not guarantee I’d make it to our next date night, but now, I had a plan in place. My husband, however, heard something different: He heard I’d be fixed.
Hope is dangerous in the hands of the hopeful. The blind optimism that had always been a hallmark of his personality set my spouse’s expectations high. When the next pill didn’t work as hoped, the fall was brutal and the letdown hurt us both. He began to look at me like I was broken, and I saw myself that way, too.
“I heard a new distance in my husband’s voice. He simply couldn’t keep up with all the disappointments I was serving him, just like I couldn’t keep up with my migraines.”
Pain changes a person, and my pain changed me. While I was trying different treatments with my neurologist, my weekly migraines played their trump card and became daily. Years of chronic pain took its toll and my condition devoured me. My disorder pulled the rug out from under everything I’d wanted to be in my relationship. I was left isolated in my body, and when I tried to reach out and share my story with others I was met with confusion and even disbelief.
Even though I looked healthy, my insides were decidedly not. Pain doesn’t always wear a fancy bandaid or a scar. The quick association that my neurological disorder was just a bad headache left me feeling misunderstood and dismissed, especially when my husband couldn’t fathom the depth of my distress.
Once, I told him that if he truly wanted to experience my pain he should go sit in a roasting sauna and hot iron his brain while eating raw fish from 2007. I shut the best parts of me away because that vibrant woman was now a migraine trigger: no more staying up late, traveling, taking long walks or laughing. My husband had married an imposter.
My broken head has been putting pressure on our marriage—even in my migrained cocoon I could feel the cracks. My husband’s resentment of my condition has never been spoken out loud, but he never had to say a word. Whenever I brought up pain levels or pain management, he’d walk off or change the subject. On the nights I was a sloth in bed, he’d leave to go out with friends. I’d encourage him to go, but his leaving stung and was exacerbated by little affection accompanying the departure.
“When we get these fixed, everything will be fine…” my husband did his best to assure.
It seemed my love’s focus on the future kept him resentful of my head in the present. Who could blame him? A sloth isn’t great at taking walks in the sunshine. With all his positivity focus in the future, the acceptance I craved in the here and now was hard to come by. It felt safer to retreat even further inside myself. It was clear that both of us sought a solace in the other we weren’t able to find, me because I was in pain, and my husband because I was in pain.
“Even though I looked healthy, my insides were decidedly not. The quick association that my neurological disorder was just a bad headache left me feeling misunderstood.”
My chronic condition has created a disconnect. The pain has been my own, but the fear had become both of ours. That fear had manifested itself in different ways, but it was webbing its way through our marriage. With no magic pill in sight, I wondered if it was enough to disconnect us from us. And now, I see how it couldn’t.
We have decided to make my migraines a part of our relationship because they are a part of me. When they’re ignored, our emotional baggage piles up like untended laundry. So over the last two years we’ve learned to clean up, day by day. If this means we buy concert tickets on the day of the concert, then that’s what we do. We work around my head because we’ve learned the hard way to focus on our connection instead of the fear of disconnecting.
My husband is still my handsome driver to different treatment options, and 11 months ago I began a new injectable medication that’s helped me see more good days than bad ones. I have no idea what this means for my future, but my occasional walks in the sunshine are feeling pretty nice.
My unpredictable head certainly added an unpredictable element to my marriage, but I understand now what motivates our relationship at the deepest level. It’s not our commitment or our love that keeps us together ― even though we do feel both of those sentiments. It’s our trust that we can make it through that bonds us. Our aim has always been to build a trust that will hold us up — especially when one of us needs to be carried.
This blog first appeared on HuffPost Personal, and can be read here