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.

Episodic migraine

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.

In remission

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.

Helpful tips

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (8)
  • Suki G.
    4 years ago

    Loved reading this, I do it a lot! I wear my face mask (I have severe chemical sensitivity), and my sunglasses.
    The other day I went to yoga class and turned off the fluorescent lights. A woman next to me had a problem with it. When I told her I have a disability, not a “preference” as she had, she said “Don’t go getting all ‘Berkeley’ on me”. I’m used to negative reactions when requesting fragrance free accommodation, never got it for fluorescent lights before. funniest part was when she said, “calm down this is yoga”. Krishna was on a battlefield dearie and it didn’t have fluorescent lighting!

  • 1n1no54
    4 years ago

    I want to do this now. Right now, I believe I’m being pushed out of my job because I take time off with migraines. I live in Australia and don’t know what the deal is with getting welfare for migraines (because it’s a disability, I’m sure). I feel as if I now have to perform like an “ordinary” person at work to even keep respect, let alone my job. Truth is, I tend to work harder than others, probably to prove my worth despite my illnesses. What can we do when we face such discrimination? Is it worth showing our pain?

  • dizzyblonde
    4 years ago

    I have actually thought about doing something like this, but I was not planning to share it on social media. I have also documented my last trip by plane to my headache specialist while in the midst of a level 8 migraine. I took pIctures and everything. I looked really awful on the flight home after getting Botox injections!

    It seems that if I was honest about what my life is really like, many people would just think I’m a whiner, complainer, or just plain crazy. The problem is that this disease has no cure. So how many times could I share what my life is really like before someone would just get annoyed. How many failed treatments are enough for people to think it’s hopeless? Apparently in my home town, it takes about 5!

    if I act like I’m ok, I feel safer from criticism. I don’t think anyone dealing with pain needs criticism over every picky thing in their life they could be doing better. So, yes I’ve lied to doctors, telling them I’m ok when I wasn’t. I knew they would just abruptly drop me otherwise. And I’m afraid any friends that I do have will be scared away by the awfulness of the whole experience.

  • Violet
    4 years ago

    I love your anger. It nourishes me.
    I have so much anger inside of me just waiting to get out. No, it’s not a destructive or negative anger. It is a good anger. It is a friend who keeps me on my feet and gives me strength to fight. Sometimes I get a bit tired of all these people in outrageous pain, trying to be positive and grateful, forgetting about their anger. Anger for me means being aware that there is a world and a community out there and we are in contact with it. It means being aware that circumstances are not ideal, rather dire. It means to respond to reality out there. To not give up. Staying in my own world, trying to get along silently with whatever I get from the outside world for me means giving up.
    Don’t give up. Get out, speak up. Show your pain. Show your anger. I am with you, Tammy.

  • Tammy Rome author
    4 years ago

    I am so sorry that you deal with pain every day. I do hope you get a chance to look around the website. There is a lot of information about how to cope with and get treatment for daily headache pain. If you need help finding anything in particular, please don’t hesitate to ask.

    I also have phonophobia almost all of the time and constantly ask my family to speak quieter, turn down the volume, etc.

    I certainly understand how difficult it is to get out when you feel so badly. Do you find that people notice you’re in pain or ignore the signs?

  • Tammy Rome author
    4 years ago

    If you’ve had a recent change, I sure hope you’ve told your doctor. There are a lot of things that can be done to break intractable migraine. They don’t always work, but sometimes they do. I sure hope you and your doctor can find a way to get you some relief very soon.

  • Lifecoachjane
    4 years ago

    Hi again Tammy, I’ve been a member of Migraine.com for quite a while now. I use the migraine journal to log information for the neurologist. It just recent got this bad, I’ve had chronic migraine for 4 years now but up until the last few months it hadn’t been every day.

    People who know me can tell I’m in pain. But when I’m in a public place I have a hat and dark sunglasses on, which as you know only extend the ability to be under the lights for another few minutes at best. So I guess, most people can’t see my eyes or my scowly forehead since I have my hat pulled down to the top of the glasses 🙂

  • Lifecoachjane
    4 years ago

    Hi Tammy,
    Unfortunately, I have a headache every day, so the few times each month I do go out in public I can’t help but show how I truly feel. It’s written all over my face, the scowl in the forehead from everything being so bright, the half closed eyes from the pain being too much to bear, my shushing people’s normal talking talking voice because they’re just way too loud, and my wimpy voice because I just want to be back in my dark room!

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