Language of migraine

We often apply words to ourselves that define our battle against chronic pain.  There is a lot of power in words and it can define how we react to our chronic pain experience.  I mean, sometimes I react quite well and other times, not so much.  I bet if I asked right now for one word to describe your existence with chronic pain one would occur to you right off the bat.

For example this post on migraine. com cursed: migraine in a word.  I can relate to that, as most of us likely can.  We do feel cursed with the burden of constant pain.  I myself often feel guilty about being ill, as though somewhere the fault is mine… or the inability to always suffer with a smile is my weakness.

Sometimes I am a little sensitive about the words applied to me as well.  A family member recently said, with good intentions I expect, ‘You can decide to be a victim or you can decide to be happy’.  This irked me.

First of all, I think we are all aware that pain doesn’t necessarily mean miserable.  Maybe if it is temporary pain sure but being miserable all the time… not so productive.  We can laugh and smile and do all sorts of things when we are in pain.  I don’t like it when people assume this means I am ‘cured’ but certainly encouraging a good mood does a great deal of good.  And truthfully I decided long ago to ‘be happy’… not that it is easy, or always there but I cultivated a certain attitude that dulled my usual sarcasm and negativity, out of necessity, because my mood was making the pain at that time hard to deal with.  The pain now is a great deal worse than then, so it is a wee bit harder to maintain, but still, the effort is worth it.

That is not the part of the phrase that bothered me, it was the word ‘victim’ that put my back up and I immediately thought ‘I’m no one’s victim’.  Because I loathe the word.  It takes all the power from us.  And maybe we are delusional to think we have even a little bit of control but to just admit defeat and say we are ‘victims’?  No, I can’t tolerate that.  We are not victims of our disease… we are survivors.  Every minute of every day… we survive.  I often refer to pain as a war; we win some battles, we lose some, we gain ground and we retreat… there is no victory, but neither is there defeat.  Victims just lay down and take it.  So, I loathe the term.

Sure we are not always rational when we are in acute pain.  We do not always make reasonable choices when we are in acute pain.  But then we are human, just like everyone else.  Intense pain causes chaos of emotions that can lead to errors in judgment.  The thing is when the pain level drops back down to a reasonable level we pick ourselves back up and we fight the good fight.  And that makes us survivors.

There are many things I hate about chronic pain.  Things like the stigma we have to deal with, that just add to our burden.  I often mention my difficulties with work in that regard and that is not going to go away.  There are the frustrations with our doctors and our treatments and that is not going to go away.  There are the profound difficulties in functioning and how we must make difficult compromises to survive and that is just the facts.  What is difficult is not letting other people’s judgments and labels stick to us… because they do over time.  But to some extent how we view our own battles, and the labels we impose upon ourselves defines how we live with pain.  I like to think every damn one of us who suffer chronic pain of every sort are warriors.  We fight a battle no one can see.  We survive torments no one can understand.  And at the end of the day, we keep going, moving, fighting and surviving.  So never judge yourself too harshly, sometimes it is better to retreat for a time, sometimes the wounds are a heavy burden, but we live to fight another day.

See more:

The facade of a person with migraine

Am I brave? Am I strong?

Language Matters: Migraine

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