June is Migraine Awareness Month. I don't normally participate in these types of things, and the last thing I want to talk about is my health, but lately I've connected with several other migraineurs (not migraine sufferers, not migraine patients; those make us sound like victims) and have realized that our stories need to be shared. Migraine disease (Yes, it's a disease. If you don't have the disease, you don't get migraines.) is vastly misunderstood. It's not even understood by doctors. The research budget for it is pennies per patient even though it affects 13 percent of the U. S. population; that's more than 37 million people in the U. S. alone. Some of those people only get one or two migraines a year, while 2-3 million have migraines more than half of the time. Then there are the "lucky" few like me, who have attacks daily.
Living with migraine sometimes feels like you're trapped in your own body. It's an invisible illness, so nobody can look at you and know that you're in excruciating pain, on the verge of throwing up, and have blurred vision, among other things. When I see someone I haven't seen in several years, they ask, "How are you?" meaning in regard to my health. Of course, I answer with "I'm good," even though I want to say, "I've missed work and was bedridden 5 days in the past 2 1/2 weeks. I take over 20 pills every day just to function. My head feels like it's going to explode. Having to be in a crowded room is agonizing. Just talking makes me want to throw up. Your perfume reeks. Since you hugged me, the smell of it is going to linger in my hair for the rest of the day, which will make the migraine I already have become debilitating. You think you're talking at a normal pitch, but to my migraine ears, it sounds like you're yelling. I'm totally faking it right now, so can I please stop smiling and go sit down by myself?" After I tell them I'm good, which they blindly accept as truth, they tell me, "You look good." Dear, I look the same whether I'm having the worst migraine of my life or am feeling fantastic. Migraine doesn't change the way I look. Except that I've gained 60 pounds from medication side effects and not being unable to do anything except sit on the couch or lie in bed. But thanks... I guess...
But migraine has also robbed me of so many things. Social life? Forget it. Romantic relationships? That's a joke. I haven't been on a single date since my migraines became debilitating 8 years ago. I failed out of architecture school my junior year of college after being at the top of my class the first two years. I had a school district official essentially tell me I should quit my job as a high school teacher because I was missing too many days. That was the day I quit and moved back in with my parents.
Day-to-day life with migraine is challenging as well. I have a constant headache, but I have to be super careful not to do anything to make it worse or I'll be out of commission for at least one day and up to three following. I can't watch TV in a dark room and sometimes can't watch TV at all. I can't go to the movies. I have to make sure I eat consistently; a late lunch is not an option. I can't go outside much because both heat and cold trigger migraines. Even washing my hands in the winter can make my body too cold and trigger a migraine. I have to go to bed at the same time every night because too much or too little sleep will trigger an attack. No perfume or scented lotion. No candles. No loud places. I even wear earplugs in church. No multitasking, like being on the computer while the TV is on. Really I can't stay on my laptop for very long at all before I start feeling nauseated. Can't do anything that gets my heart rate up. And the list goes on and on.
This just barely scratches the surface. But migraine is much more than just a bad headache, which is what most people believe. It's a complex neurological disease with many symptoms; headache is just the most prominent. It's genetic. In fact, because I carry the gene, I have a 50 percent chance of passing it on to my children if I ever have them. If my husband and I both have migraine in our family history, our children would have a 90 percent chance of having the disease.
I'm not writing this for you to feel sorry for me. I don't want pity. I've accepted that this is my journey, and I fully believe that God is using it to change me and strengthen me. I just want people to be educated and for the stigma surrounding migraine to be lessened.
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