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.