medicine – Kara Jorgensen

A week or two ago, I put out some feelers about what my readers would like me to write about, and someone suggested writing about medical conditions in a historical context. This is something I’ve dealt with my entire writing career since my first book features an amputee main character and my latest series follows an autistic main character, and after eleven books, I have a bit of a process for researching medical conditions in a historical context. Before we get going, I will say that medical history is one of my special interests, so I tend to go down the rabbit hole because I enjoy learning about this kind of thing. Also, this research tactic is predicated on the idea that you already know what the condition you plan to use is and know at least a bit about it. If you don’t have that, start there first. If you know the condition you plan to use, onward to step one!

Step One: To Wikipedia!

Yes, yes, I know Wikipedia is not a source we can immediately trust, BUT it is AI-free, updated regularly, and linked to sources. What I like about Wikipedia for writing about diseases in a historical context is that Wikipedia often has a history section where articles from the Mayo Clinic do not. The point of researching is to find out when this condition was discovered, when it got its name, were there older treatments, etc. Step one is a cursory word and basic fact-finding mission. I would take notes about discovery, any antiquated names for it (ex. stroke being called apoplexy back in the day), antiquated cures (ex. drinking executed criminal blood for epilepsy), any past beliefs about how this condition occurred (anything regarding humors or pre-germ theory ideas). If you’re just using this for a side character or a passing sentence, you could just double check the info against the sources at the bottom of the Wikipedia article and move on.

Here is a link to a website with a bunch of antiquated names for diseases. Keep in mind that the time period the name was used is not listed, so make sure to research that. ALWAYS double check your sources/information. NEVER use AI. AI is wrecking the planet and is far less accurate than just using a basic search engine. Put in the effort to read and synthesize the information yourself.

Step Two: Research the Antiquated Name

Once we have the antiquated name for the condition, you will have an easier time finding how it was treated back in the day. My suggestion would be to try to find antiquated medical textbooks as a primary source. The National Library of Medicine has a database of old medical texts, and the Internet Archive as well as Project Guttenberg have a ton of scanned books you can look through. Once you go past the 1700s, things get a bit dicey in terms of medical knowledge as they tend to stray into alchemy and Ancient Greek beliefs in European texts on the body. Often, when researching a specific illness, you’ll find a handful of scientists or a single doctor who knew a lot about the specific condition, I suggest researching them as well because you will be able to trace back their sources and potentially find more information on how it was treated pre-modern medicine.

Aside: What if the Condition Wasn’t Known Back Then?

If there isn’t an antiquated name or mentions of the condition in a medical textbook, I’m going to assume the disease was unknown at the time your story takes place. In that case, I would suggest focusing on the symptoms and how to portray them in your story in such a way that a modern audience would recognize them. Keep in mind that even if the audience doesn’t know 100% what the condition is, they should recognize it as a medical condition and how that effects your character’s life.

While writing The Reanimator’s Heart, I debated using the word autism, even though it would anachronistic. I ultimately decided not to because Oliver wouldn’t know why he was different from neurotypical people and that would be part of his characterization. Autism wasn’t a recognized condition until the 1930s, and what we would recognize as severe or high support needs autism would have been classified as schizophrenia in the 1800s. Oliver wouldn’t have met that criteria, so it made more sense to just have him exist as someone with traits that a modern audience would recognize as autism.

In our modern world, we are quick to label things to make life easier and to clue the audience in faster, but it isn’t necessary. The vast majority of medical conditions we have now were lumped into “delicate constitutions,” “old age,” “queerness,” etc.

Step Three: Research Treatments

Now, that we know what we’re dealing with, we can now look up treatments. Those old medical books will come in handy again, and you should also look up antiquated folk medicine. If you’re writing in a time period like Ancient Greece or Rome, you have medical texts from those folks, but much like the Middle Ages or Enlightenment, there will be a lot of nonsense and magic wrapped up in the cures presented. Even with more modern eras, there will be a lot of cures that can also kill. Some will be quack medicine, others are just not great in terms of efficacy. Something I would like to stress to modern writers is that disability and death were the norm back before WWII and the invention of antibiotics. It was very common for people to get sick and never return to full health or to suffer with conditions for their whole life without much relief. More than likely, these characters will be coping as best they can, but they won’t be living at a modern “standard” of health. For my disabled readers of this post, many of you know that chronic illnesses mean always feeling off and never being at full health. When you are writing about sickness, injuries, or chronic conditions, you need to keep in mind the limits of medicine at the time you are writing within it.

Example: In Kinship and Kindness, Theo has epilepsy. When discussing his epilepsy in the story, the social/cultural context of epilepsy is brought up (saints, being possessed or divine punishment, being seen as lesser, etc.), and Theo also mentions going to a doctor in New Orleans who prescribed him bromide. Bromide was the standard treatment for epilepsy at the time and is still used today, but the dosage and purity wasn’t as well regulated, which means patients often had more negative side effects than they would today. Theo mentions how the bromide made him feel catatonic and awful to the point that he stopped taking it and tried to manage his stress (seizure trigger) instead.

Aside: Can We Finagle a Treatment?

Often, there isn’t a good treatment for a condition during the period in which the story is set, but we might be able to look at modern treatments and see if there is anything that might help that existed back then. For example, I have eczema, which means in the past I would have been a cracked and inflamed mess, but in the late 1890s, doctors realized coal tar helps treat eczema. The character might have had some interaction with the substance and then tried to mix it with animal fat or lotion to create a cream. Vaseline also came on the scene in the late 1800s, and that would also be used to help calm the itching and soreness. The character might also notice that when they interact with things that make their nose run, their eczema worsens (allergies weren’t a diagnosis until later). I would be cautious with creating treatments because you want to keep in mind that, like modern supplements, they can help lessen symptoms, but they aren’t curative or able to fully treat a condition.

Aside: What About Magic?

Magic and congenital conditions or neurodivergence is where things get dicey. It’s easy to veer into ableist territory when we magically cure things that are innate parts of the person. I think the best way to think about it is, would removing this thing change who the person is fundamentally? With autism and other flavors of neurodivergence, the community generally states they would rather be accepted than cured. This also goes for many parts of the disabled community. Treating symptoms that make life hard and creating a more inclusive world through world-building is better than eliminating disabled characters entirely. Do your due diligence in regards to ableism and disabled or neurodivergent representation (sensitivity readers can help).

Step Four: Time to Write

Now that you have done as much research as you can, it’s time to write this character. My main suggestion with this is to remember that the character is a person first. They are a person with a condition or disability, not a walking pile of symptoms. You should research what it’s like to live with the condition you’re writing about and keep the community’s experience at the forefront. People with disabilities and chronic conditions (or injuries) are still going about their lives, sometimes having jobs, loving their partners and/or families, and they have hopes, dreams, goals, feelings, etc. We certainly have times where our conditions are at the front of our minds more than other times, but we aren’t 24/7 hyperfocused on our symptoms because we live with it all the time. Your ableist leanings will show through if you haven’t worked through them yet, and while it is fine to explore a character’s internalized ableism or how they deal with ableism, we want it to be purposeful rather than something that snuck in because you have some ableist feelings about disabled or neurodivergent people. As always, do your homework and be respectful.

I hope this article helped you figure out how to research diseases and conditions while writing in the past. If there is anything you would like me to write about in the future, feel free to leave it in the comments.

Today’s post is probably going to be a little on the odd side as this is, I think, a niche experience. I hope it’s a niche experience because it wasn’t a very pleasant one.

If you’ve followed me for any length of time on social media, you may have seen me post about how my eczema used to be really bad until I started taking Dupixent in 2020, and it finally was brought under control. When most people think of eczema, they think of a crusty, red patch on someone’s arm or the back of their leg, but I had severe eczema. What qualifies as severe eczema? Treatment resistant, over a significant portion of your body, impairs quality of life, and flares last a long time. I had all of that.

As soon as I hit puberty around 11, the eczema patches that were on my arms and legs basically took over my entire body. I had angry, red skin that weeped over most of my body, and at the time, the doctors prescribed cream, which helped but wasn’t enough to bring down the internal inflammation. Steroid pills helped while I took them, but within days of stopping a course of steroids, the eczema came back worse. Nothing I did worked, no amount of avoiding triggers was enough. My body was raging from the inside out, and I was consumed by pain and fatigue.

It feels so dramatic to say that, but until I felt better, I didn’t realize how awful I felt at the time. My skin cracked and burned constantly. The inflammation made me exhausted (like having HORRIBLE allergies or a cold 24/7 for weeks or months on end). And my self-confidence plummeted because I looked and felt ugly. I didn’t bother to try to cover up the open wounds on my face because makeup made it more irritated. Between not having enough spoons to care and fighting a loosing battle with my skin, I gave up on giving a shit about how my face looked and stopped looking in the mirror beyond checking specific body parts (teeth, eyes, nose, etc.).

Even the clothing I wore required me to work around my eczema. I wasn’t hiding it so much as covering it in fabric that could act as a wick for sweat. In summer, I ended up wearing long-sleeve t-shirts or light hoodies and long pants because when the open wounds were exposed to the air or sweat on a hot day, they burned and got more inflamed. I was never someone who enjoyed showing skin, but what I wanted to wear and what I could wear didn’t always align. The open wounds also liked to bleed at random, so I ruined many a t-shirt that way.

When I started taking Dupixent back in 2020, I was hopeful but skeptical. My dermatologist was convinced it would help me, and I wasn’t opposed to trying an expensive medication if my insurance was willing to cover it since nothing else worked. Shockingly, it worked incredibly well. Within weeks of starting, there was marked improvement on several fronts. It turns out what I thought was a deviated septum making it hard to breathe was inflammation in my sinuses. The Dupixent calmed my whole body. My skin cleared up, my sinus passages deflated, and my asthma has all but cleared up. I no longer sound like Darth Vader when I breathe (thanks, family, for pointing that out repeatedly when I couldn’t control it). I had no idea how miserable I was since I had been suffering with such heavy inflammation for over 18 years, but now that it’s better, I can’t imagine going back to feeling that shitty. At this point, I’m paranoid about my insurance no longer covering my meds, but a post on the failings of the American healthcare system is for another day.

Now, here comes the weird dilemma: I didn’t know what my face really looked like.

I can hear some of you now. “Kara, you had a mirror, and no one swapped out your head when no one was looking.” Yes, but I have literally had eczema covering my whole face since I was 11 years old in 2002. I never really understood what my adult face looked like with clear skin and without heavy inflammation, which causes your face to look puffier than it is. My face shape has changed, my nose looks different, my skin (obviously) looks different, and now, when I stare at my face in the mirror, I have to remind myself to zoom out and see my face as a whole rather than parts. When I try to do a Tiktok or take a selfie, my brain still rebels at seeing my face. It’s simultaneously closer to the person I have in my head and incredibly jarring because I’m not used to seeing it like this. I’m not the person who is riddled with eczema and miserable. I still have inflammatory problems that like to pop up (stiff or achy joints, the occasional small eczema patch, IBS), but my quality of life is so much better that it’s painful to think of how many years I wasted feeling horrible. Not that, that could have been helped without access to Dupixent.

So, now, I’m thirty years old, and trying to figure out my face and get used to it. I’m happy that I have so many trans friends because I think they understand this feeling of suddenly not recognizing yourself but also being happy with the results. In their case, it’s hormones. In mine, it’s a lack of inflammation. I think it helps, too, that I’m nonbinary, and I don’t feel the need to cram my face into a feminine box because it certainly doesn’t fit. The other day, I made a goofy face, and my partner looked at me and was like, “You have a nice face. Your face looks very neutral, like not too girly or masculine.” Somehow, that made my day because, ultimately, I fall somewhere in the middle. Having my body cooperate with that feeling for once in its itchy, angry life still feels strange, but I’ll take the weird small victories.

Tag: medicine

On Writing Medical Conditions in Historicals