Disclaimer: I know next to nothing about chronic pain. If I come off as insensitive, I'm sorry. I just want to know more about it so I can portray it accurately. OK, so long story short, I'm writing a story with a main character who has cervical dystonia, an involuntary and painful muscle spasm in the neck. It's part of her character, shapes her psychology; it's one of the many things she has to deal with in her life. Problem is, I'm not sure how to do it respectfully, or realistically. Here are some questions I had during the course of my preliminary research: (1) The main character is fourteen and had this chronic pain/spasm since she was ten. She would have gone through physical therapy to deal with the pain, so is it realistic that she'd still have it? That she'd still go through the exercises to keep the pain/spasms in check? Is it realistic that a child might develop chronic pain? How would this have an impact on a child her age to have this? (2) Are there things that someone with neck/shoulder pain have to avoid doing so as to not aggravate the symptoms? Would it all depend on how bad her disorder is? The reason I ask is because there are several instances of her pushing/lifting/throwing something with great vigor. (3) This may fit more in another section, but how do I show a fair balance between showing that she's got this disorder and how she deals with it and just showing her in all the other aspects of her character? The reason I ask is because it might be kind of stupid for me to say, 'Oh she's got this thing...' in the first chapter and spend the rest of the book hoping they'll remember it. I also don't want to spend ever third paragraph reminding them of this because then the chronic pain will be all they know of this character. I guess I'm just asking: how do I portray chronic pain/a neck disorder in a respectful, realistic way? Thoughts? I might be missing some other things, so feel free to jump in and educate me.
What an interesting choice of condition to write about. I looked it up, and kept reading about it. Here's the link to a particularly interesting article, which mentions a particularly simple remedy involving touch. Hope you can pick this up. If you can't, I'll copy/paste the pertinent bit into another post. http://www.channel4embarrassingillnesses.com/conditions/cervical-dystonia/
Thanks for the link. I've also checked out other sites such as http://www.mayoclinic.org/diseases-conditions/spasmodic-torticollis/basics/definition/con-20028215 http://www.rarediseasesnetwork.org/dystonia/patients/learnmore/cervical/index.htm http://www.dystonia.org.uk/index.php/professional-research/types-of-dystonia/cervical-dystonia I've also checked out Youtube videos as well, but there were still some questions I had buzzing in my head. I just felt like I needed to write about this (if you're curious for why, I'll explain, but it's kind of a long story.) But thanks for that link, will give it a read. I just wanted to get some of my facts straightened out, hence the questions. I'm aware disorders vary from person to person, some have it worse than others, I just wanted to get some insight from posters here who have had/still have chronic pain (in any part of their body, not just the neck/shoulders.)
I don't have the condition you're writing about but I do have chronic neck and shoulder pain for undiagnosed reasons. Pushing, lifting and throwing things is no problem for me. I can't think of anything I avoid because of that pain, it hurts most (or perhaps I notice it most) when I'm sitting and doing nothing.
Try going to the people who actually have it. There are support groups for almost any illness and you can usually get a very accurate description of what it feels like from the people who suffer from it. This condition is fairly rare as a chronic condition (it's common as an acute problem following neck injury) and the support groups are fairly sparse but there are some nice descriptions here and here
Ah, thanks for the links, it'll be very helpful. I looked through all the comments in the link Jannert posted. The more I read it, the more I realized that I really know nothing about this condition. Nothing at all. This is...really nothing like what the thread title suggested. Nothing like I had assumed. Thanks. Looks like I've still got a lot of research to go for this character. Thanks again, everyone.
My five cents: As a child (between about 14 and about 17 if I remember correctly) I had severe muscle spasms in one shoulder/neck on this side. I have never been diagnosed properly so to this date I do not know what happened during that time. I can only speak from (painful) personal experience: I didn't tell anyone. I didn't want to draw attention to it so I tried my best to hide it - that meant that I had to adjust my behaviour in some respects: - try washing your head with only one hand (thats still a very vivid memory!) - try pulling on a sweater with only one hand - try getting up in the morning and pulling your head up by your hairs because it is too painful otherwise (and for the succeeding hour only swivel your head around very slowly, not tilting it) - switch from carrying your shoulderbag on one side to the other - switch position in bed (if normally you sleep on the right, try sleeping on the left - adjusted so well on that one that I still do it ) - tie a warm shawl from neck to armpit and walk around day long with it Had to give up a physical hobby too (it was not fun anymore when I could not keep up with the others anymore) *shudder* glad that THAT's behind me!
The only thing I might be able to help you with is point three. I wouldn't just mention it and then hope that readers will remember it. They probably won't, or they might think it's not relevant if it's never mentioned again. The thing with chronic illnesses/conditions is that they are always there. The pain is always there. That doesn't mean your character has to whine about it all the time, but it does mean he will be aware of it at all times. Pain isn't something you get used to completely, although you can ignore it to a certain extent. What I'd do, is have him lead his life the way a patient really would. Be careful with his movements. Don't always mention that this is because of his condition, just make sure to emphasize he has to be aware of it all times. And perhaps if he is not careful enough, let there be consequences. If he's out in the cold for example, his condition might worsen. Sorry for my clumsy way of writing this down. I think my English is broken today.
Thanks. That's very helpful advice. I'll be sure to emphasize that my character has to be careful with how she moves, and insert various ways she adapts around the chronic pain that isn't bluntly "It's because of the condition!" And that there's consequences if care isn't taken into account.
Because I just want to get it right, that's all. Last thing I'd want is to publish the book, look online and see a review that reads something like, “This guy has no idea what he's talking about with chronic pain. His character shouldn't be able to do xyz.” Research did tell me that chronic pain or any condition/disorder is usually on an individual level and often on a grading scale. Not every instances of chronic pain is on the severe and disabling level. I should be OK.
