My Daily Battle With Migraine, a Silent and Invisible Opponent

I have recently discovered the term “invisible illness.” It is tossed about in many an online support group, the kind I have begun following since my diagnosis. In the last few months, I have fully come to comprehend just how apropos that term is when referring to those of us who struggle with an excruciating disease that not everyone understands.

I do not mean to complain. I am so thankful that there are good days. I am glad that in my periods of “remission,” or my few and fortunate spells without an attack, that I can appear (and even sometimes feel) like my disease never existed. I am told repeatedly that I should consider myself blessed that despite my pain, my disease is not disfiguring or increasingly fatal, and that most of my disabilities fade when the attack is over. But it is also frustrating because people who hear “migraine attack” often say to me, “Yeah, I’ve had headaches, too.”

I smile politely like my mother taught me. My disease is not an excuse to be rude. Sometimes I actually tell them that a migraine is not just a headache, not simply an occasional nuisance. Migraine is a chronic illness and it is my albatross. My “headaches” are daily, debilitating, life-changing. I have given birth to two healthy-sized children (nine and 10 pounds) – one without pain medication. I have had a surgery gone awry that nearly killed me and required me to heal for months with an open four-inch deep gash in my mid-section that made me look like a butterflied filet mignon. I have had more needles and IVs than I have had hamburgers – and I am a sucker for a good hamburger. I have had fist fights and car wrecks, broken limbs and a broken nose (twice). I have been divorced and heartbroken, gone without sleep and food, even lived in my car for a short time eons ago, and yet… I do not think any of these even remotely touch the excruciating pain of a severe migraine. Yet, this is hard to elucidate upon in the middle of a grocery store when someone says, “I have a headache too, every time I drink.” Most of the time, I smile like Mama taught me, nearly biting my tongue in half inside my mouth.

The thing I wish these folks understood most is that my headache is different from their “I-stayed-up-all-night-with-my-college-buddies-drinking-and-I-feel-like-death” headache. My headache is a dictator over my entire life. My headache said I had to quit smoking. My headache says I can never drink, ever. My headache stole my dream of writing a book – I mean it’s hard to write a book when you cannot regularly string together two words without whimpering. My headache changed playing in the rain with my kids to praying in the rain that I do not have to go to the ER again from a pressure-induced status migrainosus.

But it does not stop there. Headaches say I cannot drink diet sodas, or eat hot dogs, or have bacon and eggs when I cook a big family breakfast. Headaches say I cannot stay up late enjoying a good movie, or sleep late because I have had a rough week. Headaches refuse to let me enjoy a summer day, like a good swim during the heat of the day or a walk through the pasture in the evening shade with my patient husband. Headaches have made me stress constantly about my marriage and my job before I retired, and how long they will be patient with something I frustratingly have zero control over. Headaches have isolated me in my big lonely house and made me wish in my darkest moments that they would just kill me instead of torture me for the next 50 years.

My headache has changed my life. I have lost my hair due to medication side effects. I have lost my memory, perhaps due to medication or the illness itself. I have lost opportunities with my family, like missing my oldest son’s college graduation because I was stuck in a hospital bed with a PICC line in my arm. I take daily medication, my current prescription the umpteenth one that works but will eventually change because it ceases effectiveness and/or the side effects become too severe. I have gotten quarterly painful injections into my face, head and neck to help deaden the pain where it starts. I take anti-nausea pills to stop the vomiting, which ironically make me nauseous. I take abortive treatments, in addition to the preventatives, which require a full day of rest until the dizziness, drowsiness and dopiness work their way out of my system. I have had burning shots in my arms and hips and back. I have had IVs that blow and roll and quit and have to be re-administered until I have developed a debilitating fear of them. I have had a line of PICC line scars from when the shots and IVs fail, and I have had to be hospitalized with heart monitors and 24-hour PCU supervision, to get dangerous infusions to stop the level infinity pain. Because of my headaches, my forehead is wrinkle free but my gray hair is multiplying, my blood pressure is either too low or too high and I am always at a risk of stroke, at only 40 years old.

But, on those good days, where I can hold steady enough to put on makeup and bear to brush my hair, and I am smiling because I feel normal again, my illness is still invisible. I have no wheelchair or outward disfigurement (sans the Spock brows courtesy of medical Botox). I look like the same girl who married the love of my life with the promise of wonderful adventures together that we have not yet been able to fulfill. I look like the same girl who loves a girls’ night out, or laughter and wine on the porch with a best friend, or just staying up all night writing the next chapter of my great novel. But the true casualties of my “invisible illness” can tell you otherwise.

My youngest daughter can tell you of my shorter temper because everything – temper, patience, understanding – are shorter when fighting the pain requires all my energy. My widowed mother can tell you of my absence, as her only child, when I am confined to bed and have to cancel our plans because I am too weak to venture out. My husband, boy, he could probably give you an earful about the anger, the depression, the really awful dark moments that he sees more than anyone else, when I want to give up and push him away and give in to the hopelessness that there will never be anything that makes this ugly pain truly disappear.

“Yeah, I have headaches, too,” an ex-coworker tells me at the local hardware store one afternoon. “Have you tried aspirin?”

I take a deep breath and smile, like my mother taught me. I remind myself, he is not being cruel. He cannot see the constant battle waging inside of me, or how much fight it took just to get out of the house today. He may not know the war I am waging against my body, but I have learned not to underestimate things I cannot see. See, for an invisible illness, my chronic condition sure packs one hell of a punch.

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