#HAWMC  ” I hope you feel better!”   by Janice Tindle 

The WEGOHEALTH Activist 30 Day Writing Challenge Day 18

”  What’s a health cliché that really bugs you? What are you tired of people asking you or saying to you again and again? Write it down. Then reclaim it! Take it back and turn it around so you make it something you could be comfortable hearing.”

I had just finished explaining dystonia to someone. I told them that it had no cure, no treatment, and at best, only symptom management. I told them that it was unbelievable pain, 24-7 without let up. I went on to explain that my dystonia affects every part of my body, that it changes hourly, and I never know what will happen to me next. A wrong move could set off “a dystonic storm” and I’m pretty much done for the day. 

” Well, you look like you’re doing pretty good right now,” they said, trying to be supportive. 

” That’s because I take very strong toxic medicine several times a day,” I replied. 

“Well, I hope you feel better!” they replied in a cheery tone as we parted ways. 

😳🙄😳🙄

Were they even listening? Why not say instead, ” That’s terrible. I’m so sorry. I hope they find a cure soon.” Or ” I’ll pray for you.”  Or even better, ” What can I do to help you right now?”

People, when someone tells you that they have an incurable condition, please stop saying, ” I hope you feel better!” It makes you look clueless and leaves us feeling flat. 

I do hope I feel better too. Sadly, dystonia isn’t something that improves over time. Quite the opposite. However, our mission is to look for ways to ease the symptoms and build endurance against this cruel involuntary movement disorder. 

What helps? It’s different for everyone. That’s what makes it so difficult for patients and doctors. And speaking of doctors, those are the only people I want to hear say, ” I hope you feel better!” That’s because they have finally come up with something to actually make people with dystonia feel better. Right now, they offer DBS, which is short for deep brain stimulation, Botox, which numbs the nerves, and muscle relaxers, which a person with dystonia needs just to function. The rest is guesswork. In fact, it’s all guesswork. 

If someone with dystonia uses alternative medicine or complementary treatments and they find some reduction in their symptoms for awhile, that’s a victory for them, but it’s not a cure, and there’s no way of knowing how long it will last. 

If you see us having a “good day” or ” good hour” even, don’t assume there’s been a recovery. It’s just a temporary relief of symptoms. That’s what we live for. So to turn the sentence around to something I’d be comfortable hearing would be after an attempt that trying to relieve my symptoms, the person says, ” I hope this brings some relief to you.” That would be appropriate and appreciated. 

I hope this post makes you feel better about how to interact with a person who has an incurable condition. 

What it looks like when someone says, ” I hope you feel better!” A bit silly.

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About janicetindle.com

NOTICE: NOTHING, and I mean NOTHING, from my website janicetindle.com may be use without a request in writing to me. Permission, if granted, will be done in writing. Failure to do so will result in possible prosecution. I am the sole owner of my words and at point of publication on this site it is copyrighted as mine. - copyright 2012 Janice Tindle In 2010, I suffered a traumatic brain injury and other injuries when hit by an under insured driver. It changed my life. I now live with Dystonia, a rare and painful neurologal disorder that causes involuntary muscle spasms and abnormal posturing. There is no treatment or cure. The best one can do is treat the symptoms. You can learn more at DMRF.org. I try to write about people and things that help and inspire my readers. You can find more of my story by going to helphopelive.org. I am also on Facebook, where I have five pages, Pain Brain -Anti- Inflammatory Foods, Brain Tears, The Positive Posters Page, Traumatic Brain Injury Resources Page, Janice Tindle- Writer. I am also on Twitter and LinkedIn. Simply Google my name and my published articles should appear. I've been published in Fearless Caregiver, Today's Caregiver, TBI Hope and Inspiration Magazine, The Mighty.com, and several other publications. I am currently a caregiver for my dear mother. My hope is to someday finish my books, "Get Back Up!" and "Galicia's Granite" during my mother's lifetime. Your interest in my care, recovery and writing is greatly appreciated. Thank you. Comments are welcome.
This entry was posted in coping skills, disability, Dystonia, Dystonia awareness, honesty, human interest, humanity, jump for Dystonia, rare disorder, self, thought provoking, tindle and tagged , , . Bookmark the permalink.

2 Responses to #HAWMC  ” I hope you feel better!”   by Janice Tindle 

  1. Wendy says:

    Love the silly photo!!

    Liked by 1 person

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