Articles, Blog

How Chronic Illness Affects My Writing | Collab with Lily Meade

December 13, 2019


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!

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