Why no Writer Wants to Tackle Chronic Pain

Warning: depressing article ahead.

As I sit here in my computer chair, there are constant stabbing pains all the way from the base of my spine up until between my shoulder blades.  I have a lingering stiffness in my right leg from a little unplanned hike earlier in the week and my knees are starting to ache because it’s late in the day.  Even though it’s only around 8:00pm on a Sunday I’m exhausted, despite sleeping in until noon.

This is a good day for me.

My as yet undiagnosed chronic pain has taken so many things away from me, mainly the sports I used to enjoy and are still listed on my ‘About’ page because they’re too painful to take down.  I have no social life and just surviving a full day of work takes enormous effort.  And you know what?  Compared to some people with chronic pain, I have it easy.

Yes, I’m trying to go somewhere with this rather than having a pity party.  My point is that chronic pain is hard because it’s, well, chronic.  As in you’re in pain for every single waking moment.  That’s what makes it so hard for normal people to even begin to understand, let alone feel comfortable talking about.

So how does this relate to books?  Well, in YA you see all kinds of different people being represented and that’s awesome.  It’s nice to see LGBT people and people of various races finally being represented in fiction, even though we still have a long way to go in regards to fair representation.  I think it’s amazing that YA authors are able to talk about things like terminal illnesses such as cancer or self-harm and suicide.  But as someone with a very limited support group trying to deal with chronic pain, it would be nice to be represented in even just one book.  Yet I also have a practical streak, so here are the reasons why no author wants to tackle chronic pain:

Balancing-Act

1.  It would be a tough balancing act.

I won’t say that I actively think about my pain 24/7, but when you’re in pain said pain is always going to be in the back of your mind.  You can’t ignore it and you even start to get annoyed at yourself for letting it consume your life.  Enter fiction, which can be highly idealized representations of real people.  Real people can whine constantly, but most of us don’t tolerate such characters in fiction.  I admit, they’re annoying and you start to feel like telling them to just suck it up.

But someone with chronic pain can’t just suck it up.  Sucking it up leads to doing what you would normally do, which in turn makes it worse for you the next day as your muscles and/or bones protest.  I can definitely see where it would be difficult, if not impossible, for writers to create a character that thinks about pain constantly but doesn’t annoy the reader.  Frankly, it would pretty much be impossible to realistically portray chronic pain without annoying the reader.

Chronic Pain

2.  It’s ridiculously hard to understand chronic pain.

I used to think that people with chronic pain were weak.  Suck it up, it can’t be that bad!  You’re young, you can’t be in pain.  You’re just exaggerating.

Thinking back on that, I cringe.  I never said it to anyone, but like a lot of people out there, that was my perception of chronic pain patients.  It was horrible, unjust and plain cruel at times but it’s a perception a lot of people out there share.  I’ve heard all of those phrases and worse.

Even people you would think would understand chronic pain or at least be sympathetic (i.e. family) have a hard time dealing with someone with chronic pain.  They get uncomfortable when the topic is brought up, get exhausted caring for you and get frustrated or just plain try to one up you (i.e. “You think that’s bad, well I’ve had a bad knee for five years!”).  Most people that don’t know someone in chronic pain are just as bad or worse because there are so many misconceptions floating about out there.

Even if you are a naturally empathetic person, you can’t even begin to imagine what chronic pain is like.  I know it’s hard to hear, but it’s true.  That’s why in some ways I can’t blame writers for not wanting to tackle chronic pain, especially in YA.  It’s hard to write about something you don’t fully understand.  The constant pain, the stress, the lack of a social life, the exhaustion from lack of sleep, etc.  It takes a huge toll on you and that’s not even throwing in all of the medical appointments and waiting periods people like myself have to endure.

Marketing

3.  There’s really no market for it.

If we’re talking strictly YA, there is no market for any book with a main character with chronic pain.  The most generous statistic I’ve been able to find is that at any one time, approximately 10% of Canadians under 44 experience chronic pain.  The usual estimate for people 18 and under is 5-8%.  That is a really, really tiny market and as such publishers wouldn’t pick up a book with a main character with chronic pain.

For business-minded self-published authors, it also wouldn’t pay to write a main character with chronic pain.  For one, how many of that 10% is in the YA target age group?  How many of them read books on a regular basis?  And, finally, how many of that small, small percentage would find their book?  Business-wise, writing a book featuring a main character with chronic pain is not viable.  Would it mean a lot to people in chronic pain?  If it was done right, it would meant the world to us.  Simple acknowledgement and a narrator one can empathize with is a dream I fear will never come true.

Chronic Pain Cartoon

I know this wasn’t the most uplifting article I’ve ever done and it certainly isn’t one of my (in)famous rants, but it’s a topic I’m passionate about.  As someone with chronic pain, it would be nice to see even just one book featuring a main character who deals with the same things I do every day.  Diseases like cancer have finally been given representation in fiction and to great effect, but there are diseases that impact entire communities other than cancer.  Chronic pain is sort of the elephant in the room that everyone knows is there, but no one wants to talk about.  There isn’t much hope for a discussion happening anytime soon, but once, just once I’d like to see someone discuss that elephant.

[As a side note, most of my points also apply to chronic, non-terminal diseases but since I’m personally dealing with chronic pain, that’s what I chose to focus on.]

31 comments

  1. Zen A.

    I’m just starting to appreciate how bad chronic pain is. For the past three weeks I’ve been going through constant headaches and I fear it might end up being a chronic thing. It’s just frustrating how much it could detract from enjoying certain things.

    I think a novel dealing with chronic pain can be a success if it is done correctly and supports its suffering character with a pretty good plot. You’ve just compelled me to try and see if I can do something with this. 😉

    • Carrie Slager

      Aw, Zeinab! I’m so sorry that you’re having to go through that. Hopefully it will just cure itself and you won’t have to suffer very long.

      Please try to write a novel or at least a short story with chronic pain! I will drop everything I’m reading to read and review it right away. You’re absolutely right that it has to be done correctly or the average reader won’t keep reading it. Good luck with it if you do decide to start the project! 😀

  2. Jemima Pett

    I had about nine months of chronic sciatica when I was in my late twenties. Back pain came and went in those days depending on what I did and what my weight was. It puts you in a different mindset.
    Sometimes I wonder about writing about people who are in chronic pain, but what you would read is that mindset., It’s very easy for those not in pain (e.g. a protoganist or the reader) to dismiss them as grouchy, mean, tiresome or something else. Later you realise there is a reason for them having that mindset. It doesn’t help the relationship, though. Hmm… maybe I’ll start with a short story and see how it goes.
    Sending hugs. Gentle ones.

    • Carrie Slager

      So, so true. And thank you for the thoughtful comment. You’re right about the different mindset and it’s very hard for those not in pain to understand. If you do write and publish a short story featuring chronic pain, I’d be happy to review it even if submissions aren’t open to the general public. This is one thing I’ll make an exception for.

      Thank you. 🙂

  3. Jemima Pett

    PS There was a Dick Francis novel where the hero’s wife was on life-support at home, because of polio or similar. Good insight into living with someone in that situtation. Just a thought.

  4. Asti (A Bookish Heart)

    Such an interesting post, and I think very insightful. It’s one of those things were if you don’t have to deal with it, you don’t really think about it. But you’re right, it’s not really out there. And as much as the reasons why make sense, I still think it would be awesome if we could get those books. Not only for those who can relate, but for those of us who don’t have to deal with it but want to be able to understand. I love reading about characters who have issues that I don’t because it helps me understand others better. Yeah, it’d be a tough balancing act, but I hope someday it can be done for at least one book. I’d read it.

    • Carrie Slager

      I think it would be a difficult novel to write, but if it was done correctly I think it could really shed light on a tough subject. Chronic pain is out of sight and also out of mind, so maybe it would raise even a little awareness.

      Thanks for the comment. 🙂

  5. J. F

    Writing is hard on your body. I can sit for hours writing and it truly misaligns my hips and they really hurt. I also was headed down the carpel tunnel alley too. Needless to say the stress tying up in my shoulders. What has saved me is my daughter a DO who knows how to manipulate my bones and relieve much of this misery. My wrists no longer hurt and I’m outta that alley. And I’ve learned I have to get up and walk Seriously walk… as in exercise walk. Because writing not only is making my entire body weak, it is making it hurt.
    Most importantly, remember that pain is an indicator that something ain’t right. Like a storm radio or advance warning system. So, that treat of a massage isn’t a treat. It’s necessary for your shoulders and entire body. And go to a chiropractor to get those bones realigned. Drink water like a fish…ps that will make you get up from the chair a lot. And give it attention before it become permanent.
    AS for using chronic pain in a book, great character development as long as he/she isn’t a turn off. That they are struggling on and making it. Maybe send positive messages of help and relief for the reader to identify with.
    Who woulda thought writing could be so dangerous. Take care ya all. And most of all take care of YOU.

    • Carrie Slager

      Thank you! 🙂 And yes, it would be difficult to write about chronic pain. Your main character would have to be in enough pain to accurately portray the mindset, but would also have to be hardy enough so as not to annoy the average reader with their ‘whining.’

  6. Kelley

    Man, you hit the nails on their heads, Carrie. I’ve thought about this, so many times, not only with chronic pain but with narcolepsy (of course). I’ve read a couple of nonfiction books that I think took on these subjects well, but you already have to have an open, receptive mind to appreciate them, I think. (Have you read It’s All in My Head? It was an interesting, semi-helpful read for me several years ago. I’d love to hear your take on it.)

    You know how it’s often hard to portray books as movies, because you don’t get all of that internal monologue and emotion in movies? This is like… the next level. It feels impossible to portray any kind of chronic condition in fiction and evoke the kind of empathy we really want in a reader. You can tell someone, when they’re in pain, “Okay, now imagine having this pain all day, every day, for the rest of your life,” and they might be able to empathize a little. But I know as soon as their pain is gone, the memory and agony of it goes away, too.

    It’s the same with narcolepsy. Every time I say I’m sleepy, someone goes “me too” and thinks they can relate, and it’s so frustrating because they actually have no idea what it feels like. Sigh!

    Anyway, sorry for rambling in your comments. This just felt like a safe place to talk about these things. Thanks for bringing up this topic. And I hope you find some answers and relief for your chronic pain. 🙁

    • Carrie Slager

      I’m thinking of reading It’s All in My Head, but I just don’t really have the time right now.

      As for portraying it well in fiction, it would be incredibly difficult as you say. Narcolepsy would be on the same level; I can’t even imagine what you go through. Chronic pain/illness definitely takes a toll on your mental state as well.

      Rambling is perfectly fine in the comments! And I sure hope you feel this is a safe place to talk; its public but I always do my best to get rid of any trolls. 🙂

  7. Dawn Pritchard

    Hi, I’ve just written a YA novel about a girl in a wheelchair who suffers with chronic knee pain. It’s called: ‘Wheels and Wings’. (it’s an eBook on Amazon)

    I spent almost seven years suffering from this condition and, as I am a huge fan of YA novels, was really frustrated to find no characters like me in any of them! It was like no other teenagers were in my position! This made me feel really alone.

    I’d always wanted to be a writer so I vowed to try and set this lack of representation right. I’m not sure if I’ve written the type of book you hoped for, but it has made me feel a whole lot better and I’m proud of it.

    Sorry to hear you are suffering.

  8. Carla J. Hanna

    100% right on. So what happens next? Pain meds numb but don’t work so you dump them down the toilet. You learn to shut up and become even more isolated.

    Your boyfriend in college has heard enough whining, calls your parents, and always has some frat party to go to. Frat parties are too loud and just make that headache feel like knives are in your neck and leave you wishing you had a blindfold. Your hands feel like they weigh a thousand pounds. Then your sister comes to visit, takes you to breakfast to make you feel better. You lose it before the waitress even takes your order for the food you can’t eat anyway since it hurts too much to open your jaw. Your sis has had enough. You’ve embarrassed her for the last time. So now you’re at the psychiatrist getting anti-depressants for the pain that’s all in your mind and get more vicoden that you know won’t help a bit. Then you’re off to the psychologist. After the 3rd meeting and $130 per visit, maybe you’ve gotten one sentence out between the 55 minutes x 3 of sobbing. You’re sobbing because she’s searching for some traumatic ’cause’ from your childhood and you know there isn’t one. She refers you back to the shrink. Meanwhile, the orthopedic shows that there’s nothing wrong with your jaw, neck, back or hips. Just move more, or stop moving, or stop swimming, or swim more. Don’t run. Try the elliptical. Eat better. More salt. Maybe less. Maybe you have a food allergy. Or….. maybe you’re a whiner and allergic to life. 5 years and a billion tears later, you’ve learned to suck it up. Then you find the cause: skin cells have grown on your joints and caused all that mysterious arthritis. You have an easy arthroscopy jaw surgery and can finally chew your food. And guess what? There’s a drug that can target those cells that don’t belong on your joints. Didn’t you know?

    Hang in there, Carrie. It’s not in your head. It’s real (but don’t talk about it). But when you DO overcome this, you will be a stronger person. I promise.

  9. cav12

    I know exactly what you are going through Carrie and sympathise. After 4 car accident (none were my fault), dealing with migraines, back and neck injuries it does take a toll, physically and mentally. Get treatment physio, massage it helps, though the pain doesn’t go away it can be managed. So sorry to hear you’ve been this unwell. Hope you feel better soon. x

  10. Reem @ I Read And Tell

    I have actually never known a person dealing with chronic pain, and I admit I didn’t know much about the subject. But this article was kind of an eye opener to me. I agree, people dealing with all sorts of problems should be represented in YA, but it’s also important that the author gets it right, and does his research.

    I am really sorry for what you are going through. I hope you overcome this and be feel better soon. x

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  13. James Kennedy

    I’m sorry to hear that you’ve been having chronic pain.

    What would I do? See a doctor (I assume you’ve already done this); check the web for answers (webMD.com, etc); and do a genetic test with 23andMe.com to find any genetic diseases. Does the pain change or go away when you travel abroad? Changing diet, lifestyle, water and climate (i.e. going on holiday) can sometimes help.

    I hope the pain goes away! 🙂

    • Carrie Slager

      Thanks James.

      Yes, I’ve seen multiple doctors, therapists and specialists. I’ve Googled my symptoms, done almost every treatment I can except acupuncture (needles!) and am currently awaiting an MRI.

      No, when I’m on holiday nothing changes. Travelling makes the pain worse oftentimes because I’m both sitting more and standing more and being more active. The only thing that doesn’t cause me pain is lying down and that only minimizes it.

  14. Callum Raybould

    I have chronic pain, and I’m on track to becoming a writer. It’s a subject I want to tackle. In thinking about current characters I reassure myself the beloved Greg House and The Dark Knight Rises’ Bane are both early representations, and they’re fan favourite characters. It’s just a shame they’re not particularly ‘likeable’. They are, however, deeply sympathetic at the same time. I’d like to represent chronic pain as what I see it as: An intensely character strengthening and difficult condition, that usually lends to a resilient but somewhat bitter point of view on the world.

    • Carrie Slager

      If you do ever decide to publish (whether traditionally or self-publish) I would be more than happy to review your work. I think your take on chronic pain is totally true: we do have a rather resilient if bitter POV on the world.

  15. Kizzi

    I think it would be a great read if written from the spouse of someone with chronic pain. My husband doesn’t have pain, ever it seems. ? He has been an amazing man when it ones to my chronic pain. For 14 years he has taken me to 5-10 doctors appointments a month. He helps me walk, get up, bathe, etc. along with working 10-12 hours a day. He immediately comes in from work and is cooking, cleaning, putting our daughter to bed, etc. He never complains. I’ve had 15 surgeries in the last 3 years, back, neck, back, pain pump, 5 knee surgeries and more. He deals with my frustrations, moods, attitudes, and all. I think it would be a great book…I’m going to get busying book #3!

  16. Alice Bok

    In Stephen King’s book “Needful things” there’s a chronic pain sufferer who’s arthritis is constantly hurting her. I felt like I was represented even though my own pain comes from a scar in my spine after an MS-attack didn’t heal 100%.

    I liked this article and felt connected to you as my pain is the constant reminder that I still have not killed myself. And I think I never will. Life in pain is still better than no life at all (to a certain degree at least).
    I figured out some time ago how I can reduce the long term pain by increasing it in the short term by exercising yoga. To top it off I try to meditate after yoga, but tbh I have not been very successful due to the fact that the pain is too bad most days. I might try to switch the order, that might work. But yoga might be worth looking into.

    And I’m super sorry to give advice, I know how frustrating it can be to get well meaning advice from people who have no clue what you’re going through, but it is coming from the best of intentions, so please don’t be mad at me.
    Thank you for this article.

  17. jeannie

    Hi,
    I have been suffering with constant chronic pelvic, abdominal, hip and back pain for 10 years now. I am never not in pain. I am 40 years old. I have been to many specialists, tried everything from physical therapy, implanted electrical stimulation, implanted pain pump, 10 surgeries, weight loss, restricted diet and nutrition, and acupuncture. Every specialist has ended up saying there’s nothing more to be done and I will be in pain for the rest of my life. At this point, I am on pain meds and continue acupuncture and physical therapy to keep me from getting even worse. I can no longer work. And thanks to a supportive spouse I can afford not to work. Unfortunately no one truly understands. Especially because my pain is in the abdomen, pelvis, hip and some in the back. But this pain is not clearly evident when you first see me because I do not require a cane, crutch or wheelchair. I limp when it’s at its worse and can’t sit or stand for long periods. But because it’s not clearly evident, people assume I’m malingering, or out right lying. Of course, I wouldn’t be disabled if it weren’t real, but it hurts emotionally nonetheless when people you think are your friends or family think so little of you to say it’s all in my head. I’m so tired of it all. And feel like such a burden. But I persevere. And writing has been a savior. Albeit writing in short spurts so I don’t cause more damage by sitting for too long. I’ve wanted to have a main character who suffers from chronic pain but it’s so hard to do. Perhaps short stories are the better answer. Or a novel with a main character who has a loved one with chronic pain due to negligence? I’m not sure but I hope one of us is successful with finding the answer to this so we can draw needed attention to chronic pain and teach others how best to handle the situation. Good luck to you.

  18. Road Warrior Press Author H.J. Ted Gresham

    Hi. I ran across your post looking around for images related to chronic pain for a blog I was working on. Great post. I was born to be a writer and for forty-something years I was obsessed with the idea. I’ve written three novels, lots of short stories and who knows how many blog posts on half a dozen blogs and articles before there were blogs. I even got paid a few times for my writing, which was cool. But eight years ago the pain started and it has eaten me up until I just survive. I created a website for my writing last year after a nice session with my shrink at the VA but just blew it off in the fall when I developed new trouble. I’m trying to get back to doing something creative but it’s just not so easy. Just typing on the freaking keyboard for a while makes my pain worse.

    So there you go. Chronic sufferers are all down in the mouth and nobody wants to hear that crap, right? Buck up, guy! Things will be better… blah blah… no, they won’t. Never. Not ever. So, I run short of inspiring ideas and lack energy and enthusiasm to write. I find myself browsing Pinterest posts or wasting time with StumbleUpon and feeling guilty for not doing more with my kids.

    Anyway, great article. I shared it with a couple of your images. Thanks. My blog, the latest one, is called Thinking Occasionally. The piece I wrote today is here: http://think.roadwarriorpress.com/i-have-no-rhythm. Just if you’re curious and all that.

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