There’s an internal critic in my mind, a voice that judges me for lying on the couch and being unproductive during a migraine attack. This critic is a young, healthy person who has never had a migraine. That’s right, I constantly assess myself against a standard that has never applied to me.
Like a 50-year-old who looks in the mirror and berates herself for not looking like she’s a 20-year-old runway model, I evaluate myself against an entirely unrealistic standard. No wonder I’m forever falling short. I am not young and healthy; I never have been. Yet I regularly tell myself I should act as if I were.
I’m not alone in this. I shared a version of the first paragraph of this post with a chronic migraine forum and was shocked to see how many people identified with what I wrote. Not a day passes without a migraineur in my social media sphere saying they’re a bad parent for missing a kid’s sporting event or they’re lazy for letting dishes pile up or they’re weak for not being able to get through the day of work — all because of a migraine attack.
None of these people are stuck in bed because they are self-centered or weak or lazy or attention-seekers, but because they are ill. They aren’t staying home because they don’t want to participate in life, but because they are too sick to do so. Still, they constantly question their own illness, their own bodies, and their own day-to-day experiences. As do I.
Migraineurs are often frustrated by unkind, unthinking comments from the outside world. People who have never had a migraine seem to think they know better than those who live and breath migraine. We’re told that migraine is “only a headache” and “all in our heads.” We’re told that all we have to do is eat less [blank], drink more [blank], do [blank] exercise routine, “calm down,” or abide by some other current pop culture craze and our migraines will disappear.
The voice of the internal critic that I and many other chronic migraineurs possess appears to have developed out of these and other similarly ignorant beliefs about migraine that abound in our culture. We can easily scoff when someone tells us to stick cabbage to our foreheads (yes, this was a “cure” floating around on Facebook recently), but it isn’t so easy to brush of the implied meaning behind these messages. Instead, these insidious beliefs work their way into our self-perceptions until we, too, think that we’d get better if we only tried harder, that we’re somehow to blame for our illness.
It doesn’t matter that migraineurs constantly work our butts off at maintaining a schedule, minimizing stress, eating right, finding triggers, trying treatments, etc. We work tirelessly at improving our health — much harder than most people ever have to and more than they can possibly imagine. As if we weren’t already exhausted enough by the physical experience of migraine, we focus our limited remaining resources on trying to avoid future attacks. Despite all our efforts, we still think that we need to work harder, do more.
I’ve never cared much what other people think, so you might assume it wouldn’t matter to me that society treats illness as a sign of weakness and personal failure. The problem is that I internalized these beliefs long before I even knew they existed, let alone how harmful they are. I am not struggling against an outside force, but against myself. That’s the most painful part of all.
Kerrie, thanks for the summary and your response and to everyone for your comments.
I am a highly-functional person with pain (sort of) so if anyone wants tee-shirts, bracelets or help organizing a walk, let me know. I’m considering doing something to fund some research at the academic health center where I work.
I am fed up with being marginalized. Or marginalizing myself. Still scared to really stand up and do something about it.
My first time identifying myself in this context online has been a great experience, thank you.
You’re welcome, Juli! And thanks for sharing your experiences.
Kerrie
Wonderful comments, everyone. Thanks for taking the time to share your experiences. I appreciate those of you who pointed out that this isn’t just a migraine phenomenon.
J Hattori, thanks for the concern. That’s not something that’s on my radar currently, though there’s no guarantee I won’t worry about it in the future!
Nilofer, I sure hope big data heralds a breakthrough!
Kat, sorry for the tears, but I’m glad my story resonated with you. Migraine’s my focus these days, but you’re right that any headache disorder can wreak similar havoc.
Laura, thanks for pointing out that it’s not just migraine. That’s my perspective and I didn’t want to speak for anyone else without really knowing what they’re going through.
Chris, I agree that allowing the thoughts and letting them go without dwelling on them is immensely helpful. Yay for mindfulness!
Sylvia, excellent points. Thanks for the book recommendation. And for your kind words.
Ellen, I’m a life girl too — I like that phrase!
Juli, I love “Why don’t we have our own walks and sassy tee-shirts?”! The folks who are trying to raise awareness of migraine find that migraineurs seem to have two modes — severe, debilitating migraine that keeps them from raising awareness and people who have infrequent migraines and don’t want to think about them except when they absolutely have to. That very stigma you mention probably plays a huge role.
Kerrie
I have had a headache every minute of every day since 2005. I have tried everything and I agree that I take better care of myself than most people could ever imagine. And I work a longer week. And I do other stuff. But right now when the pain is 8/10 and I’ve been working all morning and have a full day, well, I just stopped for a minute and looked online because some times it is just really hard.
I always think of the old saw that Ginger Rogers did everything Fred Astaire did except backwards and in high heels. That’s what it feels like except no one can see it!
I do a tremendous amount of volunteer work and attend charity events and I swear everyone on this planet has a walk and bracelet except me. I am inspired by athletes with Type I Diabetes who excel in their sports. Those with cancer who find and express love and beauty. ETC. I don’t think I’ve ever read a story of someone who keeps 100% pace with those without pain with daily pain of some significance.
I don’t have so much of a negative inner story as much as a totally absent external story. There is a fear of stigma and weakness that I just can’t bear. A few people know because they have to know why I’m not at work once in a great while.
Why is this? Why don’t we have our own walks and sassy tee-shirts?
Our toughest critics are often ourselves. Moving forward is the only way I can get through those bad times. I try to grasp onto my experience and feelings within my environment – the positive ones, and live for the moment. If this was my last day on earth, would I really be so concerned about the negatives, or would I concentrate on the wonderfulness of life?
Some days are tougher than others, but I’m definitely a life girl 😉
We live in a society that constantly bombards us with advertising, TV shows, movies and magazines that hold up the ideal of the perfect woman as eternally young, slender, beautiful, healthy and able to raise a family, have an exciting career and a perfect home. We are constantly sold the idea that, no matter how hard we try, we just aren’t good enough, but if only we will buy into the latest magic potion, beauty treatment, exercise gear or diet plan. we will finally be “good enough” and worthy of love and respect.
Billions of dollars are spent by the advertising industry to make people feel inadequate, so it’s no wonder we internalize these messages and buy into the idea that being ill or disabled is somehow our own fault and that we aren’t being responsible if we don’t keep spending money on the never-ending parade of bogus cures.
I’ve had migraines since I was only nine years old, and even as a child I was told in many ways that it was somehow my fault. Some of the theories back then where that it was because I was eating chocolate and chips, or because I didn’t accept my femininity or I didn’t want to go to school or I was trying to get out of doing chores or even that I was thinking “sinful thoughts”. Even doctors would tell me that I “wanted” to have a headache so that I could get out of doing things. You would have to be insane to “want” to have a migraine! What I wanted was to be able to play outside, listen to music and go to parties like the other children, not to be stuck at home lying in bed, wearing ear plugs and a sleep mask to protect my eyes from the light!
It has taken me years to finally be able to talk back to that voice in my head and get control over it. I’ve gotten a lot of help from studying the Bible and reading books by Joyce Meyers and Joel Osteen, and using prayer and affirmations. It’s important to fight back against low self-esteem and guilt, because these negative emotions cause your body to produce cortisol and other stress hormones which makes your pain even worse.
Thank-you for your hard work in writing about migraines and helping to dispel the many myths about this disabling disease. I hope that you will be able to find relief from your pain.
An internal critic… I certainly have this voice (a strong and resonate one) in my head! I trace the source to my days in a Catholic elementary school where, as an unpleasant side effect of the religious culture, many students learned to internalize feelings of guilt. Of course, also being something of a perfectionist has fed into this internal critic voice.
Regardless of the source or contributing factors, the reality is that this voice definitely berates me for not being as productive at work as I could be, not being as engaged and active with my family as I should be, not living an active life, etc., etc.
This voice is a tough one to stop, especially when suffering from a migraine. During my migraines my thoughts tend to move into a dark space. It seems as though not matter what the topic, I can come up with all the negative apsects. These thoughts come rushing at me during the migraine. It is as if I am wearing dark glasses that make absolutely everything seem depressing, negative, dark, even evil.
Such a darkness is where the critic thrives!
I wish I could say that I have found techniques to conquer the inner critic completely. I have not. What I have found, however, is that I can allow thoughts (and negative commentary from the inner critic) to appear, to be heard and then let them go. If I can manage to allow these thoughts and internally voiced comments to move into my awareness and then slide out, without latching on and ruminating, I feel better. It does not stop the negative stream, but I am not sticking my toes in that tainted water (or wading into it, or jumping head first in there).
This technique helps me tremendously. I still suffer with the migraine and I still get the stream of negativity from my inner critic. What I try very, very hard not to get is “into it”. I cannot allow myself to grab onto any of it. I don’t want to handle it. I don’t want to run my fingers over its surface or to stick it into my pocket so it will stay with me.
Picture walking on a quiet country road. A loud car comes rumbling toward you. You can hear its loud exhaust. You can see a harsh glare where the sunlight is reflecting off its windshield. This obnoxiously loud car zooms past you, leaving a cloud of dust and dirt.
Do you stop walking, turn and look behind you as the car continues past? Do you begin to mentally curse the driver for going so fast on this country road? Do you mentally grab onto all the other negatives (choking on the dust, pebbles flying near you, etc.)?
Or, do you keep walking? Do you allow the dust to settle as you go back to your quiet walk? Do you keep looking forward?
This also applies to those of us who suffer from other types of severe headaches. I have TMJ headaches daily due to my displaced jaw. The oral surgeon who removed my wisdom teeth pulled my jaw out of alignment. The joint itself usually hurts too, but I get headaches in my temples that just throb (literally!) and I find it often prevents me from doing things. Hard to be social too, when your head is killing you! The reason for the internal critic is due to social conditioning…we are told that headaches are “just in our head”. At least migraines have some medical credibility. Please don’t forget about those of us who suffer from other types of headaches too.
Thank you for this post. I can relate to it so well that it made me cry a little bit. I do not have typical migraines, though my headaches don’t fit into the typical tension headache category either and are not clusters for sure. Since I was 12ish I’ve had frequent and strong headaches (I was told they were migraines like grandma’s but turns out they were not really typical ones for the most part), in 2008 sthing started to get pretty bad and since 2011 things got so bad that I am living with a headache nearly 24/7. On a good month I may have 4-5, a bad month I have 1-3 (or 0!) headache-free days, the headache is 24/7 day-in-and out, minimum a medium pain, usually super strong, stimes typical migraine-like…I feel pretty alone with my pain. Frankly, even reading migraine blogs I feel alone because there are so many ‘migraines are not just headaches’ attacks to headache-suffers,..which I understand though, my headaches are not the usual occasional headaches that is from dehydration or stress and a tylenol or sleep will help, but are non-stop, super painful, put me out of work, life etc pain… Even if we have different headache pains, I can relate to this article and I am so thankful that you’ve posted it. Healing vibes.
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Some day ‘big data’ will help migraineurs. There are 6 mutations (I believe) associated with migraine. If low episodic, high episodic, chronic (but not daily) and daily migraineurs could be tested for these 6 mutations – or better yet – have whole gene sequencing with correlations made for new, yet undiscovered mutations – think of the benefits! Perhaps scientists could more accurately describe a migraineur based on this info. Maybe the more mutations will correlate with more intensity/frequency, or maybe they would find that a particular mutation is worth 3 others as far as intensity/frequency. Maybe some combinations of genes will end up producing certain profiles. Maybe the proteins that are encoded by these genes will be well understood and then reproduced in labs and somehow given to migraineurs. I think that all of this will be available someday. The Supreme Court’s recent decision not to allow the patenting of genes should open up this kind of panel testing. What does this have to do with your post? Well, when I am on the couch with a migraine, feeling all of the feelings that you mention, I feel an additional level of frustration with the slow pace of medical research. I know that genetics are only a part of it all, but they are a BIG part. How genes interact with environment is the bigger picture and much more complex but not impossible to make great strides in I am sure.
KERRIE
ALTHOUGH THIS COMMENT HAS NOTHING TO DO WITH YOUR CURRENT POST PLEASE READ IT. IT HAS TO DO WITH YOUR POST ON THE CEFALY UNIT OF JUNE 20TH. I AM POSTING IT HERE IN CASE Y7OU DO NOT GO BACK TO JUNE 20TH POST TO READ IT.
PLEASE READ: DIRTY ELECTRICITY BY DR SAMUEL MILHAM MD.
HE WARNS AGAINST USING TENS AND TENS LIKE UNITS DIRECTLY ON THE BODY. HE SAYS THAT THERE HAVE BEEN CLUSTERS OF THE CONDITION ALS IN ITALIAN SOCCER PLAYERS AND US FOOTBALL PLAYERS AND HE POSITS THAT THEIR USE OF TENS AND TENS LIKE MACHINES ON THE BODY CAUSED TOO MANY EMFS TO ENTER THE BODY RESULTING IN ALS. ATHLETES IN GENERAL TEND TO USE THESE MACHINES MORE THAN THE GENERAL POPULATION TO CONTROL PAIN. HE RECENTLY MET A 27 YR OLD FEMALE ATHLETE WITH ALS. PERSONALLY I WAS HARMED BY AN ELECTRICAL MACHINE PLACED ON MY BODY MANY TIMES BY A CHIROPRACTOR. I NOW SUFFER FROM ELECTRICAL HYPERSENSITIVITY SYNDROME (EHS). PLEASE BE VERY CAREFUL ABOUT ALLOWING EMFS INTO THE BODY. ONCE THEY ARE IN IT IS VERY DIFFICULT TO GET THEM OUT.
JULIA