The December issue of Prevention carries a personal essay – purportedly written by me – on living with fibromyalgia. I say purportedly since (apart from the fact that I think the word has a nice ring to it – go on, say it aloud) it has been mutilated edited beyond recognition as the piece I had originally written.
You will understand what I mean when I say that the opening paragraph has this vivid description of me taking a deep breath and finding the pain leaving the body. Oh, were it that easy – I would be doing nothing but taking deep breaths every waking moment. And the essay also has several hundred words devoted to my husband, my “comrade-in-arms”, who (the piece says) whispered into my ears to keep me going. The editor clearly does not know me at all; I would have barked at him and said, speak up, why are you whispering like a moron? Not to take anything away from my husband’s support (V, truly, where would I be without you? how would I have survived these years?), the tone of the piece makes me cringe.
I mean, cringe even more deeply than when I wrote it – I had serious misgivings to begin with, about sharing a personal story this way. And to have it read like a soppy ‘look-look-I-am-a-winner’ (ok, whiner – have it your way) hurts. The editorial assistant in talking to me on the phone did say something about inspirational stories but I am afraid I had no idea they would rewrite my story (and not run it by me for approval) to be this sort of a chicken soup for the pain-sufferer. They have called it ‘On the other side of pain’, painting the picture of a woman who has been there, suffered that and has come out as a glowing inspiration. Sorry, people – I am fighting the pain every single day. And clutching at any straw that blows my way.
Oh, editors. My favourite people.
Anyway.
The part from my original piece that I want to share here is this…
And these are a few lessons I learnt along the way:
Listen to your body – pain is a symptom, not the disease. When it hurts, when you have fever, when you feel abnormally tired, your body is trying to tell you something, so listen to the warning signals. Be brave about pain but do not push yourself. I have heard that there is a thin line between bravery and stupidity, and often I did myself a huge disservice by not recognizing that line. Or not respecting it when I did.
Believe that all pain is real. If you feel it, then it exists. Period. Pain is physical, the intensity and frequency of occurrence may have to do with your mental and emotional state. Fatigue is not the same as laziness, nor is constant pain tantamount to hypochondria. And don’t let anyone tell you otherwise. Ask questions and demand answers. It is your body and it is your right to know. Try other systems of medicine and therapy – ayurveda, acupuncture, reiki, yoga, whatever suits you, whatever makes you feel better.
Wow. That is incredible. I thought standard good editing practice was to share changes with the writer and discuss them, before publishing.
Apu, yeah, I guess it not as ‘standard’ as we think!
O, that was baaaad… Editing shouldn’t actually take away the tone and substance of the original copy.
I love editors too, but all that aside, I just wanted to say that you’re the second person I know who suffers from fibromyalgia. I’ve read her personal stories extensively as she is a writer too and so I can say, somewhat truthfully, that I feel the pain. More power to you.
Mahesh 🙂 – I need all the power I can get. Thank you! (does your friend have any stories publicly available for me to read?)