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How Chronic Illness Affects My Writing | Collab with Lily Meade


Hi community of awesome, I’m Ava Jae, and
this is bookishpixie. So, something a little different this week. A little while ago, Lily Meade, who runs her
own channel on writing and bookish things invited me to do a collaboration with her
in which we talk about how chronic illness has affected our writing. I though that was a great idea and also I’m
going to link to Lily’s channel below so you guys can check it out, and here we go. I’ve kinda mentioned in here on and off about
chronic illness, um, not overly in depth, but I have rheumatoid arthritis. Rheumatoid arthritis is an autoimmune disease,
in which the immune system turns against you and starts attacking your joints and the lining
between your joints, so yeah. It’s an incurable, degenerative disease, which
means it just gets worse over time and you can’t get rid of it. Oftentimes autoimmune diseases are hereditary,
um, but no one in my family has any autoimmune diseases, so…I’m the lucky first! *laughs* Oh, God. What this means for me is on a good day I
have low levels of pain, so I have certain joints that are always painful and they make
it difficult for me to do certain things, um, but otherwise I’m all right. On not-so-good days, I have flares, so that’s
when the disease is more active, and other joints start being painful and oftentimes
I’ll get headaches, or I’ll just feel sick, and yeah. So how does all of this affect my writing? Before I had to deal with this disease, I
used to handwrite a lot. I wouldn’t write, like, my entire book by
hand, but because I did a lot of my writing in class, I would take a page of notes—so,
say, like, math notes—and that would be, like, all of this, and then I would layer
another page underneath it, but leave, like, this much sticking out, and on this little
bit of space I would write, and then up here would be my notes, and so it would look like I
was taking notes, but actually I was writing a book. Because that was the kind of devious child
that I was *laughs*. I don’t recommend that, by the way, uh, you
didn’t hear that trick from me. So. *laughs* Point is I hand-wrote a lot, and another time that
I would hand write is when I was revising, and I don’t know exactly why I found it easier
to do it this way, but if I needed to rewrite a scene or write a new scene, I would often
do it by hand. I think part of the reason why is writing
by hand forced me to slow down and pay more attention to my words, which then would make
it come out a little cleaner than my typed first drafts, so that became part of my process. Queue rheumatoid arthritis, which attacked
my dominant right hand first, so now it has become painful for me to write by hand. I still do it when I need to anyway, like
when I’m signing books or bookmarks and stuff, but, basically it starts to hurt very quickly. The second way rheumatoid arthritis affected
my writing was less physical and more in the way it changed what I wanted to write about. I mean, I’ve always loved writing fantasy
and science fiction, so that hasn’t changed, but the characters that I wanted to represent
did. I’m twenty-four, and I was diagnosed with
rheumatoid arthritis when I was twenty, but it really started a year prior when I was
nineteen, but to this day I have never read a book with a protagonist who had rheumatoid
arthritis. I honestly didn’t even know you could get
arthritis if you didn’t have Juvenile Arthritis, but I thought that if you didn’t get it when
you were, like, little-little, then you wouldn’t get it until you were in your sixties/seventies. And I was wrong: you can get autoimmune diseases
even if your whole family is completely healthy, and even if you’ve been completely healthy
up until the point where you aren’t anymore. So yeah, I wanna see characters who are chronically
ill and specifically who have rheumatoid arthritis, and so I’ve been writing several of them myself. But becoming chronically ill made me realize
how little representation there is in YA for chronically ill characters who a) haven’t
been miraculously cured or b) by the end of it, aren’t dead. Chronic illness has changed my life, and it’s
also made me a more empathetic person, and someone who no longer assumes what struggles
someone may or may not be dealing with based on what they look like. So that’s what I’ve got for today! If you liked what you saw, don’t forget to
subscribe and comment, and check out Lily’s channel, and I’ll see you guys next week!

46 thoughts on “How Chronic Illness Affects My Writing | Collab with Lily Meade

  1. Yay, I'm so glad we did this! I know where my disease comes from (my brother has a less severe case, so they think we inherited it from our father), but it's definitely frustrating to be The Sick One when everyone else is healthy. My main character is not chronically ill, but she did deal with a terrible illness and is disabled because of it. I'm really loving writing characters who are strong with limitations, not in spite of them.

  2. Thank you for this video–the lack of conversation about this type of chronic illness is what made me think my pain was normal despite being affected by it for most of my life. I was recently diagnosed with Ehlers-Danlos Syndrome, another of those fun diseases that only gets worse, and it has absolutely changed how I think about characters and how I approach writing. Best wishes to you dealing with your arthritis:)

  3. Was really brave of you to make this video and to be able to talk about it so openly! 🙂
    I'm sorry you have to deal with this it's really not a fun thing, no matter what you should be proud of yourself for not staying in bed all day and being depressed about it because you're actually doing something when lot's of people would have given up, also I feel that the impact it was on your writing is definitely positive since you want to write characters that represent illnesses that aren't often seen in novels I think that's pretty neat!! 😀

  4. You seem cheerful dispite your condition, and it sucks, i Know it in other form of illness, but hey you know what it feel its fuel for our fire as writters, a Hug form Portugal congratulations on a terrific channel, and a very useful resource, obrigado e cheer up

  5. When you WERE 20?! Dude, you look like you are! I don't know how old you are and don't need to answer if you don't want to, but I'd be shocked if you are 30 or nearing it.

    Anyway, I don't really let anything about me go into my writing. That may sound shocking, but whenever I write something personal or try to create an idea for it? I can't convey it well to the audience and I don't really feel the need to do such things. Even if what happened to me or what is happening to me can connect with others, I can never really connect if I tried.

    Not saying it's a bad thing, but personal things put into your work can be very hectic and not work out well in the end. For me only I guess. But I recently collaborated with another writer for a book he was working on and was only there to hear what he wanted to do and having me ask him questions and you know all that. Helping him make it good if he saw nothing wrong with it. Anyway, since he told me not to totally share EVERYTHING. I'll simply say the main character has Autism and is an alien. He's expected to lead the story and his story couldn't be any more boring and useless. Not to say he's a bad writer, he has an ensemble cast and they're fucking amazing. Just that his one personal addition EXTREMELY hinders the whole thing. I'd say scrap the character since even without his personal addition, the overall character is cliche. I don't like bashing anyone's work, but if he could re-work this character? That'll improve the story, just that his personal connection blinds him from making a good character.

    I'm sure there are stories and characters out there that succeed with adding in their personal struggles and whatnot. But it takes a good amount of time to get it right because the connection to this addition or whatever blinds you from seeing the bad. Most of us are blinded by the excitement and hopes of whatever you are making is gonna be great! But I really don't allow that to happen to me and it only ever slows my progress, but in a good way that my initial plans and direction were changed for the better due to it. I love shades of grey and like to incorporate it into my recent work I'm trying to make. But as I write this, I have a terrible cold and it renders me from even going to school, let alone go out there and film. Just hope this could die down before the week is over.

    But it grants me more time to think of ways to film and schedule time and dates. While making me miss an attendance I was already having problems due to other problems. But this comment is too long and it's not totally important. Besides that, these are my thoughts on why a STRONG connection can be bad. Not saying don't do it since I actually try to make a story or character with my struggles. Mainly just a character I can act whenever I get around to filming it and make it feel more natural. Don't know if you know me from Twitter, but my opinions about yours are rather conflicting and cannot explain it well in 140 characters. Look at this comment!

    The best way I can end this is a quote I absolutely love that correlates with my love with balance and shades of grey. "I don't need someone that sees the good in me and wants me. I need someone that sees the bad and still wants me."

  6. I've been dealing with Lupus and I can definitely agree with you when it comes to the lack of representation in YA. I also want to see more chronically ill characters, and I believe this would definitely be very helpful because it would bring more awareness (most people don't even know about Lupus) which is very needed.
    I love your channel <3 and it really has helped me a lot with my own writing 🙂
    All the best <3 Stay strong

  7. I'm glad you guys did this collab. My son, the same precious face in my profile pic, was born with Spina Bifida and though it may not be something I have to physically live with, it effects a lot of what I do including my writing.

  8. Love the trick with overlapping paper to write in class. I'm gonna try that with a couple of iPads and my Apple Pencil the next time I'm in a boring meeting at work. 😜

  9. That crazy moment when a video pops up about being a writer with a chronic illness, and you're a writer with a chronic illness. That crazier moment when you start the video and see the chronic illness is the same one you have! Rheumatoid Arthritis (and also fibromyalgia)

  10. thanks for this… I've had chronic migraines since I was 7 and it is crazy how people have no idea. I gain and loose weight like crazy based on my headaches (long explanation) but people always are like wow you look like you've lost weight and I don't want to explain that food helps moderate my migraines (blood sugar changes) but often time with a different kind (focal) I just can't keep food down…

    I don't mind but yes, overall I look fairly healthy lol so no one knows

  11. Haha I love that you wrote a book in class by hiding the paper under what you were meant to be doing! Thanks for making the video about your Rheumatoid Arthritis and how it's affected your writing etc. I agree books often focus more on the extreme cases of illnesses and not so much ones that you have to live with constantly but sometimes are not fully present all the time.

  12. Hay! I love you're videos; I've learned a lot sence I started watching them. I'm having trouble with confidence im my characters. I feel like if I show their emotions they'll seem silly or cliché. There are a lot of people telling me how I should write my book. How do I distinguish between throw away advide and keepers. And how do I find the confidence to write these characters the way I see them and not the way people tell me they should be?

  13. I'm so sorry to hear this, Ava Jae! Hopefully you will experience lots of happy moments as well that will keep you going and sometimes it is okay to feel miserable about having to deal with this negative permanent thing in your life. I personally fell in my neck during gymnastics at the age of 14 or 15. Right now I am 26 and still dealing with a chronical whiplash that affects literally everything I do. I also find a lot of joy and distraction in writing and this point you are my main inspiration to keep going with it. Thank you so much for your many various and helpful videos on writing. You are gold, if not a dime! Bless you and stay strong.

  14. I came upon my chronic illness the hard way, one too many IEDs but I can appreciate your struggle.  At least I can take comfort that mine came from doing something worthwhile, which gives me comfort.  Getting it thru random chance has to suck, and you have my empathy and sympathy and all my good vibes.  Have you switched to using any dictation software to adapt?  Could you do a video on how you adapt to your RA (regarding writing)?

  15. I'm someone who rough drafts by hand, so I can't even imagine what it's like to have Rheumatoid Arthritis.

    I've read one series where the protagonist has Rheumatoid Arthritis: The Lincoln Rhyme books by Jeffrey Deaver. Lincoln Rhyme is quadriplegic and his assistant has Rheumatoid Arthritis.

  16. It's kind of that sad even someone with Chronic Illness myself (Ehlers Danlos Syndrome) I never actually thought to include a character with a Chronic Illness in my books. I suppose it's become so normalised to have a perfect body that even I didn't stop to think "Hey, you know not every person can do this thing."

  17. I also have health problems, CP, from birth and it is difficult when you are in pain everyday. But passion allows us to march on. Thanks for sharing.

  18. My mom has rheumatoid arthritis, so I understand that it's far more than just not being able to use your hands and feet like you should. It sucks. 🙁 So you have my sincere sympathies.

    It's not easy to talk about your problems in public, knowing that every time you do you risk being harassed about it by people accusing you of attention-seeking or whatever. But it's very important to share these things, not only so others with the same condition know they aren't alone, but also because hearing other people's problems puts your own into perspective. When I'm freaking out over my first-world white girl problems, listening to people talk about their real problems goes worlds to clearing my head.

    Thanks for sharing, and keep up the writing! I will have to check out your books one of these days. After I check out Jenna Moreci's like I've been saying for the last year or so. And maybe finish the one I'm writing.

  19. Don't answer this if you don't want to, but: has your illness ever inspired people in your personal life (like parents or other family members) to think they don't have to respect your privacy, and try to involve themselves in your writing projects against your wishes? Because you "need their help" and "can't make your own decisions" or such?

  20. O my gosh! I had no idea! Your so brave I'm making a book about a assassin and I just finished the first chapter! You enspired me so much! Go die in a hole rumitoide arthritis!

  21. Thanks. It takes a lot of courage to open up and be vulnerable in a very public forum. Best of luck in managing this crappy condition.

  22. Really? aaaaaaaaaaaaaaahh you made me sad on my b'day morning..
    But you are brave and strong is what i have deduced from your vlogs. I wish alll the devils from hell and gods in heavens bless you for the strength needed to fight the illness.
    Your admitting and making fun of it makes me adore and respect you a lot more than before.Happy writing brave new author.

  23. I watch your videos because I could say that writing is one of the most important aspects of my life. And, I know this is weird, but I also have the same illness. Yes, artritis. But it affected me when I was a kid, it hasn't come back since then.

  24. I'm sorry to hear about your health issue. Your talking about characters (and at one point specifically protagonists) with health issues really struck a chord with me. I'd thought more along the lines of disabilities, but certainly health issues are a part of that whole spectrum. I'm currently working on a book with a schizophrenic protagonist. My struggle is writing him as a "regular guy" with an issue rather than someone defined by that issue. Also, I tend to think of protagonist as "hero" which I know isn't always true. It's hard to think of a schizophrenic as "hero" for me and doubly hard imagining an audience being willing to go there with me.

  25. That's terrible that you have to go through that but it's awesom that you don't let it stop you writing

  26. I'm really glad you talking about this because I also have an autoimmune disease as well. mine attacks the blood vessels throughout my body. it caused rheumatoid arthritis, some internal problems, and for me to lose About 80 percent of my vision. I am also writing the first manuscript I plan on getting published, and my MC has some of the same problems that I do. I've been worried about if my readers would relate to her, but since I found someone who feels the same way, its given me a little more hope that the readers may enjoy reading about her.

  27. I feel your pain – figuratively. I'm the only type one diabetic in my family (there are type twos, all but one aren't related by blood though.) and I just found out that I have Addison's disease (critical adrenal insufficiency). I'm 24 now but I've been having the symptoms of Addison's for 5 years and I've been diabetic since I was 6. Also have a strong suspicion (my mom has longer than me) that I may have ADD or ADHD but I've never been tested. The Addison's has been the worst though because your adrenal glands control 90% of your energy hormones and without them you have no energy, no motivation, little will to wake up at all, and are chronically fatigued, lethargic, and have severe dizzy spells… yeah, needless to say, I was sleeping half of the day and not doing much else when I was awake. Learning to get back into a writing habit when I didn't even have enough motivation to get up off the couch to make my one meal of the day was fun. I didn't even realize how bad it had gotten until I started getting my medication a little over a month ago. It was actually scary how different I feel now. My appetite is back, I have energy, and I've gotten things done this past month that I've been wanting to do for two years now. Disabilities suck, no matter what you have. I feel your pain.

  28. Wow. I had an uncle who suffered from Rheumatoid Arthritis from the time he was 30 years old. While he had one very bad year where he couldn't work because he needed to drive to be able to work and his neck was his main issue that was the only bad year year he had from the illness and that was back in 1967 and the drugs have improved since then. After that he was able to travel all over the world and was extremely active until he was 75 when smoking and drinking caught up to his heart. I say this because being someone with more than one chronic illness you can likely live a life with few restrictions. Your blog inspires me.

  29. I have lupus cerebritis sle and dicoild lupus and fibromyalgia and I want to write a book but no clue! How do I start? Ty

  30. While this is not a chronic illness ad I love how this commercial explores a disability https://www.youtube.com/watch?v=g_h6Jojip2Q

    Like you I aspire to write stories with characters who are chronically ill or disabled. There is also the Cormoran Strike detective novels he is a war veteran who lost a leg in the war. This series of novels is written by J.K. Rowling under the pen name of Robert Galbraith. While the book is not YA it is worth a read.

  31. I was born with nf and i also have arthritis and its a pain to find a book that has a character that has health issuies so you can create your own character. I'm struggling with that right now. I can't seem to pull my characters out of my head no matter what i do

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