A Pained Life: How Words Can Hurt

A Pained Life: How Words Can Hurt

When someone hears my story about the medical malpractice that paralyzed my face, invariably they say, “What goes around comes around” or “He’ll get his.”

Some talk about “payback” or say “Karma will get him in the end.”

I get it. It’s a way to make me feel better. But it doesn’t.

It doesn’t because if he’ll “pay someday” or if life “takes care of it” then I have to ask the other side of the equation:

Is my pain the result of my bad Karma?  Is the malpractice, and the stopping of my life and dreams, my payback?

After all, if he’s getting his, am I getting mine?

I think about the clichés people use when confronted with a situation they do not understand or know how to deal with.

words“God never gives you more than you can handle.”

He doesn’t? Then why is my pain overwhelming? Why am I struggling so hard to live with it? Am I a failure because I can’t handle it?

“It could be worse.”

Worse then what? Cancer? Losing a loved one? Of course not. But you know what? Pain consumes our lives and it consumes my life. When it doesn’t, it stops me from being involved with life. It keeps me isolated and drugged.

No. I am sorry. I already know I have it better than many people.

I think of my eye, my face, as separate from my body. Many of my doctors also see it that way, saying “I can’t help you because your pain is above the neck.”

My body works. I can get out of bed in the morning, dress myself, walk, bend, do everything a body needs to do. That puts me ahead of many, including many who live with chronic pain.

I have a roof over my head and enough money to get by, at least in the short run. That puts me in a better position than many others who are not as fortunate. I try to remember that, but when you say to me “It could be worse,” I feel worse. I feel chastised.

I have had 12 brain surgeries to try and help the pain. My head is a mass of indentations, soft spots, scars, and additional problems because of the operations.

A few years ago a friend told me, “You’re brain damaged.”

I was glad we were on the phone. I did not want her to see my reaction. I was appalled. And angry. How dare she say that! That expression is fraught with meaning, not a lot of it good.

But wait. She was right. I am brain damaged. I hate writing the sentence, much less acknowledging its truth.

“You need that like you need a hole in the head.”

Oh please. Don’t say that.

As a result of a problem with another surgery, my neck “fell down.’ I now have 2 clamps and 12 screws holding my neck up and in place.

“You have a screw loose.”

Even though it’s a joke, I flinch when someone who knows about my neck says it.

“You have it so much worse than I, so I can’t complain.”

Sure you can. Your misery, while you have it, even if it is just a bad cold, is as awful for you as my pain is for me. I know a cold vs. chronic pain is a mismatch, heavyweight vs. lightweight, but my pain does not negate yours.

“Life isn’t fair.”

“Whatever doesn’t kill you makes you stronger.”

The first is definitely true, but the second? Maybe.

When life, your friends, even strangers, hand you a cliché, when lemons seem the order of the day, sometimes you just need to ignore it and do something nice for yourself.

Me? I think I’ll go make some lemonade.

Carol Levy

Carol Levy

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Carol Levy, Columnist

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Your story resonates with me on many levels. I’ve had a number of the same clichés said to me (RSD/CRPS patient) over the years and have only now started to be less polite with my responses. Recently I was told by a well meaning friend that I really needed to get off my medications because they are really bad for my body. I reminded them that there was something else that was really bad for my body… Relentless chronic pain! Her intention was not malicious, but it’s a reminder to me that people just don’t get what I’m dealing with no matter how much I educate them. They have absolutely no real point of reference and can’t fathom what one day is like in my body. I’ve come to terms with that and move on to other things, but yeah, it’s very obvious and it makes you cringe at every cliche. Thanks for confirming I’m not alone. 🙂

Elevan Years

Your comment regarding karma, really resonates with me. I have had people make the same comments about the man that attacked me, shattering the left side of my face/eye socket, skull fracture etc..leaving me with a similar condition that you have, trigeminal neuropathic pain (multiple reconstructive surgeries, bone infections etc).

So exactly, if he is going to get his karma, which hasn’t seemed to happen yet, was this my own karma payback? I was only 20 years old at the time, hardly old enough to make a footprint in my own life, let alone deserve payback. Oddly enough, I apparently stupidly, was trying to help this stranger, when he set my life on a whole new path.

So, yeah, the cliches, have really no value to me and certainly provide no gratification. Thank you again for sharing your experiences.

Doris Swertfeger

I have RSDS/CRPS. I think that the comments that we receive is mostly from people that do not know what to say, have never really had pain as RSD can inflict and/or their have no true caring concepts to be listened to. Either way, we cannot change other people but we can learn from them. Actually, RSDS has taught me volumes in that I can still do more than I ever thought that I could or was told that I could by doctors. It is a school of constant learning and striving to be the best person we can be. It is a new way of life to be lived by us in a way that we would have never chosen but we can help ourselves and others by walking this journey. Thanks for sharing your story. Doris