Writing About My Chronic Illnesses

Hi friends, welcome to stories with your friendly neighbourhood chronically ill friend. Not actually, but I thought that this week we could talk about my experiences writing about my chronic illnesses, of which there are multiple. 

First and foremost, I’m going to start with endometriosis, since that’s the one that I first started writing with and the first one that got diagnosed. For those of you that are unaware, endometriosis is a condition where tissue similar to the lining of the uterus grows on other parts of the body. It is not limited to the reproductive organs; endometriosis tissue has been found on every organ in the body, including the brain. The reason I’m so specific about the definition of this condition is because I’m sick of misinformation being spread about it, but we’ll get into that later. (Quick aside: I usually refer to endometriosis as endo as it’s easier to say and type.) Anyway, I first started writing with a character who had endo before I was actually diagnosed with the condition myself. My doctor suspected that I had the condition, but I was waiting for a diagnostic surgery. While I was waiting for that, I started writing “Love Through Agony”, where Tessa was on her own journey of getting diagnosed and living with endometriosis. That novel has a very special place in my heart, because Tessa is just an extension of me, and as established in last week’s post, writing this novel helped me survive my journey with endometriosis. After that, I kind of took a break from writing characters with endometriosis…until the idea of writing a long distance modern day cowboy romance entered my head, and I mean, hey, why not complicate it further by making Catalina have endo? What’s really interesting about this novel as I’m writing it is the idea that Dallas wants to be there for her, but due to the distance between them, he can’t always be there for her in the ways that she needs. His best friend, Bo, is also the negative voice in my head that tells me that I’m faking my illnesses, so that was also fun to play with. Plus, Catalina is in her mid twenties dealing with the pain and has been for about the last eight years, so it feels more authentic to me now than writing about someone just being diagnosed with the condition.

Secondly, the next condition of mine that we’re talking about is scoliosis, or the fact that my spine is crooked. A minor curve in the spine is normal, but mine is bigger than what’s considered normal. This is actually one of the more recent conditions that I’ve been diagnosed with, but I’ve been living in constant back pain for the last year and a half, so I feel like I’m kind of qualified to write about it. To be fair, the project that includes this is still in the planning phase (and will be my NaNo project if all things go as planned), but a big thing that came up was the fact that Valerie is very reserved in telling people that her back hurts, since her pain was invalidated and it hurts all the time, so what else is new? I will say, I learned it’s very comforting for me when my back hurts to have someone rub it for me, even if it doesn’t take the pain away, and you bet your buns that Archer does that for her. As established last week, I write the characters I need. Honestly, there isn’t much to tell here yet, since I haven’t written the novel yet, but make sure to check out my post about what I’m doing for NaNoWriMo 2024, since I’m going to be teasing more details about this project there. 

Next, we’re going to talk about migraines. Ugh. Mine were actually medication induced, but they were terrible, and I wouldn’t wish them on anyone. Well, except one of my characters. In a project that I’m still plotting, the main character is a bit of a workaholic on her small business with her best friends, and because I enjoy making my characters suffer, Finnley gets migraines. It interferes with trying to get work done (that totally isn’t based in reality…not at all) and it affects her relationship with her partner because they’re at different places in terms of pursuing their physical intimacy. I wasn’t in a relationship when I decided to give Finnley migraines, but I can only imagine how that would play out based on my experiences with other chronic pain in a relationship. 

Lastly, I do have another chronic illness, but I’m not ready to write about that, both here and in my writing. Just know that it’s the reason that I had to take time off of writing over the winter, and that I do want to write about it, but I’m struggling to actualize that in a romance novel. 

So, I can hear you asking yourself, “What crazy way is all of this kept track of?”. Funny you should ask. You see, I have a notebook entitled the Chronic Illness Girlies, which is where I keep track of all of their medical information, similar to the binder that I as a real person have. First, it talks about their journey with their chronic pain: how the symptoms started, how they got diagnosed, how they cope, etc., just laying the groundwork for what chronic pain looks like for them. Next is the direction of the project. See, I don’t want a character to have a chronic illness for the sake of it; I want it to provide a layer to the character that adds conflict or just generally shapes who they are. So, this section is me taking the idea of a character having a chronic illness and figuring out how it affects the story and why it’s there. There’s even a colour organized chart, because if you know anything about me, of course there is. The last page in each section is how their partner reacts to their chronic illness. If you’re a person with a chronic illness, you’ll know that having a supportive partner is a big part of that, so I’ve figured out what the partner does and how they react to various parts of the chronic illness. This section also has a colour organized chart. 

Now, I said that I don’t want to write a character that has a chronic illness just for the sake of them having it, and I still mean that. However, I wished that there was a book normalizing endo when I was first dealing with it, and so, I wrote that book for myself. My perspective on writing about people with health conditions is the same way I view writing queer characters: why should perfectly healthy (or straight) characters get all of the representation in media? Why not have a character that has a curved spine? It doesn’t damage the way that she can fall in love, and 2% of the population lives with scoliosis (which is about the same amount of people that have red hair), so why not let them fall in love? After all, they’re people, too, and if I’ve said it once, I’ve said it a thousand times before: the reason I love writing is because I think love is one of the most beautiful things humanity can do, and that doesn’t stop just because someone isn’t 100% healthy or “normal”. 

Writing about my chronic illnesses has been incredibly therapeutic to me, and if I could provide that representation to even just one other person, then that would mean the world to me. 

That's all for now, folks!

-C