People with chronic illness are known to declare that they are in some way better because of that illness. That it has taught them to value every moment, cherish the good times, accept life’s curve balls with grace, become braver and stronger. (In fact, the latest Headache Disorders and Migraine Blog Carnival is all about these unexpected blessings.) I absolutely agree that chronic migraine has changed me for the better, but writing about it is difficult without descending into cliches or trivializing the monumental effort of day-to-day life.
How Chronic Pain Has Made Me Happier, a recent Lifehacker post, has some great points about the enriching lessons of chronic pain. Unfortunately, they are couched in bumbling terms that minimize the struggle and oversimplifies the relationship between psychological and physical health. It frames illness as opportunity — a characterization that always raises my hackles — and leans toward the “just think positively” self-help meme. (Keeping these points in mind, it is still absolutely worth a read.)
All these complaints are minor in comparison to the glaring reason why this article does not apply to migraine: migraine is not a pain disorder, nor is chronic migraine a chronic pain disorder. Migraine is a complex neurological condition that affects every system in the body. Migraine ain’t just a headache and it ain’t just pain.
Everything the writer talks about, all that he’s able to overcome, while not simple by any means, only represents one piece of migraine. Pain may be the most obvious, debilitating feature of migraine for most of us, but the nausea, fatigue, dizziness, mental fogginess, mood swings, and heightened sensory awareness can be just as debilitating. And that’s only a smattering of the many under-recognized symptoms of migraine.
Treating migraine as either a headache or a pain disorder perpetuates the myths that surround this illness. It also trivializes how debilitating migraine attacks are, whether acute or chronic. According to the World Health Organization, severe, continuous migraine is as disabling as quadriplegia.
Please think carefully about how you describe migraine: whether you call it a headache or head pain, a pain condition or a neurological disorder, a disease or not. These may seem like insignificant differences, but research abounds that the words we use shape the reality we see. And the reality that non-migraineurs believe.
The most important rule for migraine headache relief is to recognize the early symptoms and treat them as soon as possible. Once a migraine has been allowed to develop, it is very difficult to harness the pain and discomfort. In order to prevent a migraine, changes in lifestyle should also be considered in order to avoid things that might trigger them.
Well said, Kerrie!
Kerrrie:
Thanks for all you try to do. Personally I avoid talking
with my chronic migraine with people. Have find that
with all the preconceived ideas and lack of knowledge
about migraines-that to get into the subject with other
persons is usually just not worth it.
My neurologist-had 2 interesting stories to tell me about
migraines. First when my doctor was in college-he finally
saw 1st hand a person who got migraines- a roommate.
That changed his perception about this condition. Then
an employer called my doctor up-and said he had an employee
who was my doctors patient. And the employer said it is
just like a headache. Can’t he work today. Those 2 short
stories encapsulate a lot of the lack of knowledge with the
general public. Friends generally have good intentions-but
have no reference point where you are coming from.
Kerrie-I must substantiallydisagree with anyone who says
having chronic migraines is a blessing. That has not been
in my case-and if you would ask 100 persons who have
continual migraines they would say it has been a negative
experience for their life. Maybe it is a defense mechanism
some migraneurs use to deal with their situation.
Yes you can learn a lot by going thru this experience. But
it can affect your life so severely-that the negatives far out
way the positives. I doubt if any chronic migraneur if you
asked them tomorrow-OK-you can go thru the next 20
years of your life with this much pain-but will learn a lot.
Or you can have zero (0) migraines for the next 20 years.
Any logical person would choose the later.
Just my perspective. But seriously doubt anyone who has
migraines which have stopped the person from working-
walking-enjoying life-would wish to go thru even 1 more day
of the pain. And just imagine the pain persons with migraines
have to go thru who dont have access to “Triptans.”
Respectfully,
Timothy Bauer
********
Thanks for sharing your thoughts, Timothy. I’d been wondering how you’re doing.
I’m not sure anyone is arguing that chronic migraine itself is a blessing, but that they have learned some valuable lessons as a result of having them. I certainly agree with that. Would I prefer to have been without chronic migraine? Absolutely! But it is here whether I want it or not and, in learning to live with it, I’ve also become calmer, more mindful, and more aware of the value and purpose of life.
I’m curious, do you think your experience has been entirely negative or has anything positive come out of it?
Take care,
Kerrie
I am blessed with a good health and I haven’t experienced a migraine. I only experienced headache whenever my prescription glasses increase its grade so it is hard for me to imagine how am I going to deal migraine. I guess there are a lot of treatments out there that the modern science could offer.
I steer clear of talking too much to non-migraineurs about migraines. They live in a different world, like a world without a particular sense. During migraine, the world is perceived differently, through a lens of depression-pain. After my C-section, I marvelled at the completely different quality of pain that I experienced. It was pain without emotion attached to it. I thought it was a piece of cake compared to migraine. Yes, I should “own” the word migraine but I shy from it because I sometimes feel like I can read non-migraneurs minds and their disdain (which might not even be there). The migraine state as I know it is negative and devoid of appreciation without extreme effort and mindfulness. I find it is not worth expending the energy during migraine to find that state – better to wait for a clearer moment.