Another kind of show
I’ve been faking wellness for half a lifetime and guess what? I’m still sick. In the beginning I complained, cried, and then vomited when I could no longer hold it all in. Despite all the cultural messages to the contrary, I wasn’t faking anything. The pain and agony were very real. My sympathetic parents could only protect me so much before the cold, harsh realities of life outside the home hit me square in the face. I think I was about seven years old before busy-bodies with no medical training started telling me and my parents that I was “just going to have to learn to live with a little headache.” It wasn’t okay to cry, scream, wail, vomit, whimper, vomit some more, then curl up in a sweat-covered fetal position to sleep it off. And don’t even get me started about the many times I was expected to function normally as soon as the pain even started to ease up. For goodness sake, give a girl at least a few hours to get past the hangover!
Many of you have similar stories.
Your responses to three consecutive months of articles on this very topic make that all too clear. As I’ve read through your responses, there’s been a recurring theme. We fake it when we believe there is no other choice. Some are lucky enough that those times are rare. Many still force a smile every single day because they have no other option.
This is so messed up!
What kind of society says “suck it up” and “no big deal” to millions of people suffering tremendous pain? It’s much easier to ignore such suffering if the afflicted suffer in silence. We fake it because we have been conditioned to believe that doing so will cost us less than if we tell the truth. This isn’t a localized problem. There are just too many of us who have similar stories. The only way to fight this kind of widespread stigma is to counter it with the truth in a big way.
I dare you to show the truth.
This year for Migraine and Headache Disorder Awareness Month, I’d like to challenge everyone reading this to a “migraine sit-in”. We’ve been engaged for a few years by spreading awareness online. That’s just not enough for me anymore. Frankly, it hasn’t been for quite some time. People need to see and hear us in a way that cannot be ignored. If you are able and daring, don’t hold back. Teach others what it means to live with migraine, if only for one day.
Chronic or daily migraine
Maybe just choose one day. Make it a low-symptom day when you would normally be at work or out in public. While you are there, don’t hold back. Don’t “put on a happy face” or pretend you are anything except downright miserable. Then make sure they know that this is you on a “good” day. You can do your work or run your errands without putting on a fake smile for the sake of others.
Choose a day on which you are actually having an attack. Go ahead and wear those dark sunglasses. Wrap your head in an ice bag-filled scarf. Take your medicines where others can see you. Be honest about how long an attack really takes – from the mood swings and yawning of the prodrome all the way to the last minutes of postdrome brain fog. If you’re feeling drained from 4 hours of pain, then say something. If the lights are a little too bright and the noises are too loud, ask someone to shut them off for awhile.
If you’re lucky enough to be in this category, hurray! Now spend some time talking to others about what it used to be like. Don’t talk about how great you feel now or share what finally worked. Instead, talk about what it was like when bright lights and strong smells put you in bed for days. Tell them about that last thunderstorm when you thought your head might actually explode. Tell them why they never knew how bad it really was.
Explain why you’ve waited so long to get up the courage to show the world the true face of migraine. Describe the intensity of the pain in terms of injuries or illnesses that non-migraineurs can relate too. Compare the sensory overload to that of autism (I specialize in treating ASD, so I can say for certain that my phonophobia and photophobia due to migraine are eerily similar to the sensory challenges of those with autism). Compare the nausea to food poisoning or the stomach flu. Compare the pain to meningitis, a broken bone, cancer pain, childbirth, and more. Explain that word loss, aphasia, and lack of focus are like temporary dementia and that allodynia is like their worst, all-over sunburn. Whatever you do, don’t compare it to their last headache. That’s a formula for glazed-over eyes, a mindless nod, and some unsolicited useless advice.
Worried about trolls?
Don’t let them stop you. Get feisty with the ones who try to shut you down or minimize your suffering. Plan your comebacks ahead of time so you won’t be caught off guard. This is our time to give the world a migraine show they will never forget.
Sit ins are for the brave. This might not be for you just yet. However, if you dare, you might just discover that putting on a migraine reality show for one day leads to more and more days of being your true migraine self.
p.s. Wear purple, too!
Have you taken our Migraine In America Survey yet?