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sageblogsthings · 4 years

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Do you have any tips on how to write characters with scoliosis in a respectful/accurate way?

Thank you so much for asking! I smiled like an idiot when I saw this ask. :) Let me preface this by saying that scoliosis can vary a lot from person to person depending on the severity of curvature, location of curvature, treatment methods, etc. So I think that, as with anything really, getting a wide range of viewpoints and voices on the issue will make it easier to write! Honestly just scrolling through the scoliosis tag on tumblr will give you a good sense of what it’s like for some people too. With that being said, I’ll talk a bit about my experience, and how I wish that characters with scoliosis were portrayed. Just know that my answer is far from universal amongst those with scoliosis. Also, medical treatment where I live is pretty shitty so I may have some other undiagnosed stuff that I’m attributing to scoliosis who knows lol. And I’m still learning a lot about it myself! Ok, with that caveat out of the way, here we go!

I’m gonna put a tw here for discussions of scoliosis, chronic pain, anxiety, and depression

Also, for those who don’t wanna read about my experiences with scoliosis, if you scroll down there’s 13 tips on how to write characters with scoliosis (a lot of these tips apply to chronic pain in general tho). :)

To talk about my own experience a bit, I was first diagnosed with scoliosis when I was about 10 or so. When I was first diagnosed they told me it was minor and just to watch my posture. Scoliosis runs in my family but for most of my family members it’s pretty mild so I didn’t worry about it and went on my merry way. In hindsight, not the best way to deal with that but ah well.

Flash-forward to college. I had been having back pain and headaches for awhile, but I just figured it was studying for prolonged periods of time, carrying a heavy backpack frequently, and not watching my posture when I studied. I never connected it to scoliosis because I hadn’t had a check-up since that first diagnosis. Again, not the best idea but life happens.

I just finished my junior year in college, and I have had almost non-stop doctors appointments all year. It started after I had some sharp pain in my lower back, and got x-rays to see what was going on. Several doctors appointments and an ER visit later I find out that my scoliosis has gotten significantly worse, and that I have a fractured L5 as well. One thing I don’t see mentioned a lot with scoliosis is that it significantly weakens your spine (usually lower) because your weight distribution is thrown off. I had a job that involved some pretty heavy lifting, and voila fractured L5. 13/10 would not recommend btw.

My curvature (I can’t get consistent answers from doctors) is somewhere in the 20′s in my lumbar region and in the upper 20′s/lower 30′s in my thoracic region. At least with the neurosurgeons I’ve spoken to, they don’t consider you a candidate for surgery until the upper thirties or forties, unless you have significant neurophysiological symptoms. Treatment options vary widely depending on where you live, what you can afford, and what your doctor will give you a referral for, but most doctors will recommend physical therapy off the bat. To my knowledge, most doctors do not recommend bracing anymore, though I think in children that might be different (not so sure on that). So currently, I am waiting on an appointment with a pain management specialist and will go from there.

Even though the curvature in my spine is relatively minor, I still experience significant symptoms. Some of these symptoms include sciatica, pinched nerves in my arms, legs, and back, muscle spasms in my upper back and neck, swelling of my hands and feet, and numbness or pain in my hands and wrists. Also, because my spine curves more in the upper portion of my back, my left lung cannot expand as much as my right lung. This isn’t always a problem, but I get shortness of breath pretty easily, and any respiratory infections make it super hard to breathe properly (pneumonia sucks a butt). There’s also the obvious bit of scoliosis where I stand a little crooked. Another thing I think that not a lot of people know is that how “lopsided” you are can vary from day to day. This doesn’t mean that the curvature is changing day-to-day, but the muscles may be more relaxed or tightened on some days.

So that’s my experience pretty much (bless you if you read all that!). But, to show an example on the opposite end of the spectrum, my friend had (I think) a 30 degree curvature in the thoracic region and 50 degree curvature in the lumbar. He had immediate corrective surgery (I’m not sure exactly what kind) and now aside from the scar on his back and that he looks like a table when he bends over (his words lol i’m not being mean) you would never know. And even weirder, he had no significant symptoms before his surgery aside from occasional sciatica. So your symptoms don’t necessarily depend on the degree of curvature, where the curve is located has a lot to do with it. Typically, more curvature in the upper spine is more painful but that’s by no means always the case.

Ok, so how in the heck does this all apply to writing characters? I promise it does, I’m not just rambling (well, maybe haha).

13 Things to Consider When Writing Characters With Scoliosis:

Their symptoms may vary from day to day. This may mean that some days they can do activities like running or baseball, and other days they can barely type or walk without pain.

They may have no, mild, or severe symptoms, depending on the location and severity of curvature, and other factors.

What is medical care like where they live? Dealing with doctors, neurosurgeons, physical therapists, etc. is just a part of having scoliosis, and very often an incredibly draining aspect. This is especially true if you have anxiety or other factors that make going to the doctor even more unpleasant.

Were they misinformed about scoliosis? Unless you go to someone who specializes in scoliosis treatment, you’re probably gonna get inaccurate information about something. For example, I was told constantly as a kid to watch my posture. Yes, this can have an impact, but more and more research is showing that scoliosis in many cases is influenced more by hormones (especially in teenage years) than posture. There’s also more egregious examples of this, such as a neurosurgery PA who recently told me not to ever use CBD to alleviate pain because it’s a “gateway drug.” This is literally impossible. So for writing, this could translate into frustration or even anger for your character. But it could also make for some funny situations later! I wrote down everything that crazy PA told me and it still makes me laugh from time to time.

Don’t give them a back-breaking job. It will literally break their back lol. I’m not saying they can’t be active, but if someone is impacted by scoliosis on a daily basis they probably aren’t working as a professional wrestler. Or maybe they are, and your story is trying to explain how that works lol

What do they do to manage the pain (if they have it)? For me, the symptoms are typically inflammatory in nature so things like ice, heat, turmeric tea, and anti-inflammatory medications help relieve the symptoms. This is one of those things where getting other viewpoints is good though too!

Is their spine visibly crooked? If so, are they self-conscious about it? This varies a loooot, and may even vary with symptoms. For example, maybe some days when the pain isn’t bad they wear a cute dress that shows their shoulder-blades. But then when the pain is bad, they just want to look like a hobo. I say this from experience lol.

Have people treated them differently because of it (positively or negatively)? Some people may experience bullying if their scoliosis is more visible, especially as a child. They may also be treated differently by adults, who are trying to look out for them, but nevertheless it still makes them stand out from other kids.

Do they make jokes about it? For example, I can be found frequently saying “my spine said yeet!” or “straight spine? idk her” or my personal favorite “my spine is about as straight as I am.” Scoliosis sucks, but living with it you learn to find humor in it too.

Are they going to get surgery for it? I can’t speak on this part since I haven’t had surgery, but I would imagine that there is a psychological aspect to this that you would want to mention for your character, as well as any logistical aspects like finances, dealing with trash insurance companies, etc.

How does scoliosis impact their mental health? This is one of my pet peeves, and it’s entirely founded in a lack of resources and education, so I’m not aiming this at anyone specifically. But scoliosis does impact your mental health, especially if you have pre-existing conditions like anxiety or depression already. It can be incredibly depressing to want to do something as simple as going for a walk, but you’re in too much pain. It can also really impact anxiety. For example, when I found out about my curvature change in college I had one of the biggest anxiety attacks I’ve ever had. There is also the added issue of not being able to breathe properly at times, which can make a panic/anxiety attack much worse (in intensity or duration). Of course, mental health issues can also be exacerbated by the environment you’re in, so that is definitely something to consider for your character.

What was their diagnosis like? What factors impacted their ability to get a diagnosis? Lack of adequate medical care or having crappy insurance is a huge problem, and it makes it really hard or even impossible for some people to get a diagnosis. And for most neurosurgeons or specialized treatment facilities you have to have that diagnosis and referral for them to be able to do anything. There may also be aspects of your character’s home life that prevents them from getting a diagnosis. Do their parents think they’re faking it, or that they just need to sit up straight? Is your character trans, and/or wears baggy clothing? I’ve heard several stories of undiagnosed cases because of this, so it’s something to consider.

Ok, I think this is the last thing (huge huge thank you to anyone still reading this!!). But please, if you’re writing a character with scoliosis, or any chronic issue/disability for that matter, avoid the trope of you’re still beautiful to me/you’re beautiful anyways/I don’t see your disability. Some people might not get what I’m saying here, so let me explain a little. If you have a character with significant scoliosis, to the point it impacts their daily life, and they meet another character (potential friend, love interest, whatever) and this new person grows to love them in spite of their scoliosis/disability, that is a huge red flag. It implies that they are seeing them through a lens of not having the disability, and they love that version of your character. But that is not your character in reality, because your character in reality has a very real disability. In general, just try to avoid the “I don’t see __,” in writing and real life. That could be applied to a disability, or the character’s race, sexuality, etc. In all cases, it dismisses a fundamental part of who that character is, and what experiences have shaped them into who they are. If your character has scoliosis and it has shaped who they are, it is important for other characters to recognize that as well, otherwise they aren’t really seeing that character in their “full glory,” if that makes sense. I’m rambling a bit at this point and I’m sure there’s other posts that make this point better than I have, but the takeaway is just please don’t write scoliosis as “you’re beautiful anyways.” Scoliosis or no scoliosis, it’s just “you’re beautiful.” Full stop. But part of how your character may come to recognize that beauty within themselves, or how others see it within them, may be influenced by their experiences with scoliosis.

Phew, I did not expect that to get so long but it’s a topic I’m passionate about and I haven’t seen information on scoliosis geared towards writers before, so hopefully this will help! Again, a lot of this is based on my own experiences so please do not take any of this as a universal guide to scoliosis, it definitely isn’t. And if I’ve said anything that people disagree with (or even agree with!) or have questions about, I am always open to polite discourse and discussion. :)

I hope that this answered your question some, and if not feel free to let me know! Thank you so much for asking this!

#ask #scoliosis #writing characters with scoliosis #kit chats #am i oversharing? probably #am i gonna share this anyways? yes #chronic pain #writeblr #representation #kit answers

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ryangha · 4 years

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oh i definitely think youre right about osu n im a lil sleep deprived but yeah!! i was so shocked! and the fact we couldnt seen dana's face while she was ordering sasa to carry out the attack is. hm. i think that osu genuinely thinks what hes doing is for the best, and he approached dana bc of her never showing criminals mercy + he trusts her. osu himself never expected himself to live this long bc the twins cared for him, but morae is someone hold no2 back while at the same time

upturning his entire family. the earlier chapters said he was good at planning and manipulating people to get what he wants, and even in the ‘I’ll trust in you and believe u no matter what so talk to me’ his phrasing felt. concerning ('why are you up?’ 'because everyone decided to leave me alone’/'seeing u is so hard these days it makes me sad’/'I’ll help u with anything, so tell me’) but osu sounds a lot more…. Deliberately Searching for the response he wants in jp so maybe thatscolouring my view. ah, just remembering. osu said he was suprised he lived this long earlier. he himself has made peace with the fact that hes p much a dead man walking and that all his family is immortal and will see him come and go, so seeing him obsess over morae must be making him a lil antsy that no2 may Never get over morae (or him when he dies so this is like. shock therapy) - n u saw how destroyed he was when no2 got arrested.then again, i dont know what mental acrobatics led to this choice bc we dont. spend much time in osus head. or any time actually. he loves no2 and no2 loves morae but i wonder if osu feels a lil detached from morae himself?? like how naga felt about tracy and venom. but instead of trying to be sad he Cant bc morae sucks and gets upset bc of how much anguish this person has put him (osu) through and he hasnt even done so on purpose or met him so osu just wants him gone.N bc no1 is is primary caretaker from what i see and no1s been real fucked up abt morae since forever and that’s another reason osu may want him gone. but i do think he has an inferiority complex abt his health im sorry im like everywhere rn. im not making sense but yeah. basically i agree w everything u said im just Something atm

also i learned on the korean wiki osus longest relationship description is about dana and he has a section entirely dedicated to porn. dana has a section dedicated to her crush on him and her combi name in hs with judas was 'steel cotton candy’ and that added on with the fact that she was shy in her kid years and got teased made her dye her hair. then she cut it bc it was a pain in the ass to wash blood out of it. good night zzz

oh shit soooo that’s a bunch of facts that i have not thought about and youre right. osu really is trying even though if he thought he doesn’t see himself living very long, he at least could see baekmorae coming to his end so that osu will know that no.2 is better off than constantly trying to get him back… hmm i think you were alluded to this scene (this in the eng scene and for my refresher lol):

hmm idk i think it’s not as big as a diff in english but osu definitely sounds like he’s expecting no.2 to spill sumn to him… esp when he starts off saying ‘no one was here when i woke up’ or alike and continues to go on about how not only no.2 is busy but also no.1 (which they are involved with baekmorae’s case nd i think they’re right at least to involve osu as least as possible aside from using his family’s wealth/name in the later chpt) so he feels left in the dark. i don’t think he is in the dark tho he knows more than he lets on for sure… like you said, he’s “Deliberately Searching for the response he wants’ and i can read that in the eng trans as well :) also totally see what the readers are thinking earlier cause! i looked over and readers feared that osu was going to stick on no.2′s side where he would try to help him get baekmorae back, which earlier this chapter no.2 was talking to his sis that she doesnt blame baekmorae since murder was the usual back then, but i’m kinda glad the author wrote osu the complete opposite direction. i think he does look past the fact no.2 desperately wants to redeem himself/make amends to baekmorae and bc baekmorae is such a shitty person, osu would rather help him in the way of getting baekmorae outta his life like some emotionally festering parasite.

also agreed AGREED that we don’t get into osu’s head or barely any, which is a disappointment cause i know in the beta idwtkoh there was an arc where osu got kidnapped nd i feel like we could’ve known more about osu’s shady character back then compared to official idwtkoh. getting off kilter a little but yeah idk osu for sure knows that he’s sick nd been sick that it’s kinda ironic that his dads are immortal healers that can heal so much with him as an exception. it’s apparent that osu’s strongest relationship is with no.1 and no.2 so to see no.2 struggle with getting baekmorae back is like. YEAH exactly with how crushed osu looks (i also remember how osu apologized to dana nd that face crushed dana in return aaaAA) but i think osu for sure feels detached from baekmorae like. osu might be filling in his place for fake KNIFE but baekmorae is just this figurehead of villainy that SPOON’s been working for long to catch and i just feel like it’s easier for osu to feel apathetic or even dislike for baekmorae since he’s the source of no.2′s pain? well, we dont really know how much osu knows of no.2′s past and how he abandoned baekmorae but like. does osu think it’s the better path to forgive no.2 when he’s trying to apologize/redeem? don’t think osu has put himself in baekmorae’s shoes even though his relationship to no.2 is nearly the same without the mentor/mentee role. but yes, osu is prolly just like ‘if sumn messes up no.2 then they need to leave. permanently.’ or alike lol. it is strange to me how their positions regarding to no.2 are very similar tho….

HAH one day ill be able to translate those korean articles concerning osu’s relationship with dana AND dana’s crush on him but today is not that day. just wait for it lol but as recurring it is that osu’s bad habit is porn, i always forget to write about it when im writing osu lol. i didn’t know about dana’s combi name ‘steel cotton candy’ with judas hahaha they both must’ve hated that. idk if that special chpt was translated but dana and judas did dye their hair black without telling each other and thought they copied one another haha. i love these two’s interactions also sad for dana that she got teased for her pink hair. but i know she probably handled it all on her own. OH that’s so badass for her to chop off all her hair cause of the blood……. dana is the best i swear. and thank you for sharing all these facts nd im sorry if my response in turn is lackin cause im kinda out of it too lol but. always a good time talking about idwtkoh, especially a character like osu…….. he was a missed opportunity for more character exploration honestly.

THANKS AGAIN

#sorry this took so long #plus i was looking up stuff to match up with u #and idk shit too so #thanks for the discuss!!!#asks #이영싫 #yuissamidare

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