Recently, I read a contemporary romance with an epileptic heroine. I’m not going to name the book/author because I don’t want to make you think this is all about her or just this one book. Although that book triggered this rant because I deal with epilepsy myself, the problem is a common one.
The heroine’s name is Faith, and the information we know about her as an epileptic can be summed up in three points:
- She’s been having seizures at least since third grade (age 8)
- She was still having seizures at age 12
- She was still having seizures in high school (starts at age 15)
These are all points of information we’re given so that we know she had an uncontrolled seizure disorder for a minimum of 7 years. We also “see” her have a seizure as an adult, but we’re told that’s because she didn’t take her meds for a couple of days because she ran out. (More on that in a minute.)
Now, let me first say that I didn’t expect this heroine to have the same experience of epilepsy that I have had. People with disorders, illnesses, disabilities are not monolithic, which is precisely what makes them interesting. I was eager to see what kinds of choices the author would make for Faith and her family. Because make no mistake, no matter what your experience of epilepsy, it affects family even if you don’t contract it until adulthood; when those having seizures are children, it’s worse. Especially if the seizures cannot be controlled, which seems to be the case with Faith’s.
And I say “seems to be” because we’re never given any insight into how Faith, or anyone else in the family, has dealt with her epilepsy. Someone with as many seizures as she seems to have had would never be allowed, for example, to swim without a trained lifeguard. And she’d have been a LOT more interesting as a character if when talking about how she’d gone swimming in the lake as a kid she’d explained that she’d had to sneak away to do so since she wasn’t really allowed to swim just with other kids. But the author didn’t say that. She just blew off all the safety concerns–and legal concerns–associated with seizure disorders. Faith does all the stuff every kid does, including babysitting.
We never know how old Faith is when she finally gets her epilepsy under control. But the assumption is that she does have it controlled at the beginning of the novel since she’s driving around with nary a care in the world.
So here she is, this heroine that I am supposed to identify with. And she doesn’t bother to refill her prescription, so she has a seizure. And, given her father’s reaction, it isn’t the first time. And I sit there and go…”REALLY?” Seriously. If this had been a paperback, I’d have thrown it. But it was on my Kindle and that’s too much money.
Because while some people are non-compliant with their meds, those people are rarely allowed to keep their driver’s licenses. They’re also frequently suffering from some other major disorder like depression (which, by the way, is extremely common in the epileptic population, so it’s worth paying attention to if you’re writing an epileptic character–she doesn’t have to be depressed, but chances are she has some emotional issues or has been through therapy). People who are as well-adjusted as Faith is portrayed don’t simply take a couple days off life-saving medication because they’re too busy to pick up their refill. What would happen if she were driving when she passed out? She’s portrayed as being almost goody-two-shoes, but someone who really cared about others wouldn’t behave that way.
And even if your prescription runs out, pharmacies–especially a pharmacy in a small town where everyone knows you and knows you have seizures–will give you a couple of pills to hold you over until your doc can call in a new one. This isn’t true for all drugs, of course, but anti-convulsants have very little street value.
I was diagnosed with epilepsy in 1984. A friend of mine was diagnosed last year. We were both told the same thing among the first directives: no booze. None at all until your seizures are controlled, and once they’re controlled, a glass here and there is fine, but enough to give you a hangover is enough to give you a seizure (basically, a hangover is your body withdrawing from alcohol, and it lowers your seizure threshold dramatically). And yet…Faith drinks. She gets buzzed on martinis. She takes a bottle of wine out of a party to console herself mere DAYS after having her seizure.
Let me be clear: I have no problem with an epileptic character who drinks. But for goodness’ sake, make her self-aware enough to understand what’s she is doing. It’s like the swimming. I just want some sense that the author hasn’t simply co-opted the “useful” parts of a complex and often devastating disorder as plot devices.
I don’t consider my life all that different from the lives of people without epilepsy in the grand scheme of things. I take a couple of pills a day, every day. I carry extras in my purse. I have little packets in my suitcases just in case I forget to pack them or they fall out of my hand luggage. Every couple of years, I get an EEG. My drugs are expensive, so I pay higher insurance premiums to get better coverage for them. But overall, you could write about my daily physical life without me looking much different from any other character in your book.
But you couldn’t write about my emotional life–and that’s what romance novels are supposed to be about–without paying heed to things like the way the drugs make me fat and tired and how that’s made me feel. Or the way that other drugs have made me lose my memory and my hair. Or the way that even though my seizures are well-controlled, I still look up every time I hear someone ask “are you okay?” and check to be sure they’re not talking to me.
There are things I cannot control, and I know I cannot control them, and I am reminded of the fact that I cannot control them twice a day every day when I take those pills. No, I don’t think about it that way, but if you imagine for even one second that it doesn’t affect me, that I am not aware of it, you’re wrong. Regardless of what her experience of epilepsy is, every epileptic has a relationship to her disorder that is just as important as any other relationship in her life. (And, like any other relationship, it’s apt to change over time.)
And that’s true of any disorder, disease, or lasting injury, not just epilepsy. If you want to write an epileptic character, I’d be happy to talk to you about my experiences, my friends’ experiences. I can direct you to forums with people who will talk to you. If you want to write this stuff, for goodness’ sake, research the emotional impact, not just the physical symptoms and jargon.
Don’t make me throw my Kindle, and don’t co-opt my disorder for your plot device.
Thank you. Anyone who is writing a book involving a character with a disorder needs to be speaking to people with that disorder to make the portrayal as authentic as possible. I spent the early part of this year writing a book about a hemophiliac character and there were times I had to put it on hold until I could find someone with a clotting disorder to talk to because I really couldn’t proceed knowing I might get the details all wrong or miss nuances that wouldn’t occur to people not living with the disorder (which I did, and I was fortunate enough to find resources willing to help me catch that stuff and correct it.)
TL;DR: do your research, folks.
Amelia – I’ve always found that people are happy to help when you’re trying to write about someone with their problems. One of the great advantages to the Internet is the availability of people literally “at your fingertips.”
This is a really excellent post and a salutary reminder.
Wonderful post. I think another important point you don’t mention, though I’m sure most people with epilepsy are aware of it (and people who don’t have it likely aren’t) is that almost all anti-seizure meds are teratogenic. So therefore I’d hope a character might consider birth defect issues if things look like they’re headed for a child.
(I was put on a common med also used for epilepsy for a non-seizure disorder and was not warned about teratogenic side effects. Ugh.)
Absolutely. It didn’t come up in this particular book, but it’s definitely part of any woman’s diagnosis. Even if you don’t particularly want children, the idea that you might not be *able* to, or that if you accidentally got pregnant it would have more serious consequences than it does for other women is always there in the back of your mind.
Also, I don’t know what drug you’re on or how often you take it, but one thing they’re learning is that most anti-convulsants can cause bone loss. So get your bone density checked if you can.
Excellent post. Thank you.
Thanks for this. The incorrect information about so many medical conditions makes me crazy.
This was great, thanks for writing it. I think it’s really important for author’s to read.
Well said. I don’t mind an occasional error, discrepancy, whatever, but please research the subject thoroughly before writing. I learn from the fiction that I read. Please don’t misinform me. Love details about places I’ve been and those I long to see, etc. Heath issues are something we all face in one form or another. Be true to the subject.
Laura, I learned so much from this post. Thank you. And of course I agree with what you say about our obligations as writers not to play loose with the facts.
I think you’ve hit on it with the “useful” parts of the disorder, just the dramatic, sympathetic bits, but nothing too inconvenient or real. Given that I’m reading romance for relationships, the more deeply I understand the characters, the better. A surface-level treatment like that–and I’ve seen it done with glossed-over illnesses, financial or family circumstances, past trauma–makes me wallbangingly nuts.
Exactly. It doesn’t matter if you get the little bits you cherry-pick correct if you’re going to ignore the major aspects of the illness/trauma/whatever.
Greetings. I found my way to your site by way of SBTB and now look forward to buying and reading your book — due entirely to the excerpt you posted — as this is not usually my ‘type’ of story. I read your older post on epilepsy and found the information about seizure disorder, as compared with an epilepsy diagnosis, interesting and relevant to me. Thank you for continuing to teach.
As to accurately portraying a character’s medical condition, the issue of accuracy is not limited to medical; there are a few things I know a lot about and every now and then I read a novel that messes up so many basic details that I am squirming as I read.
LML –
Thanks for the kind words. I hope the reason the older post is relevant to you isn’t too tragic–if I can do anything to help, let me know.
-Laura