Based in 17th century France, One For All tells the story of a chronically ill musketeer – Tania de Batz, a young girl fighting a battle that has more to do with the condescending world rather than her illness itself. Chronic illness representation in fiction is almost non-existent, but author Lillie Lainoff, has set out to change that with her book.
There was a point in Lillie Lainoff’s life when she was on 24 pills a day. She had developed something called Postural Orthostatic Tachycardia Syndrome (POTS) when she was just 12 years old.
It was a particularly rare condition – only affecting 0.2% of the United States’ population, according to The National Institutes of Health.
“POTS is a strange condition,” explained Lillie. “Like a lot of chronic illnesses, it varies from day to day and you can develop new symptoms that you never had before, and sometimes symptoms can go away.
“But it never really goes away – it kind of just lingers and flares up.”
“Dizziness was the biggest thing,” she added. “Headaches, fatigue, brain fog – that’s a really bad one.
“Sometimes you’ll have entire weeks where your symptoms will die down a bit and then you’ll have flares, where you’ll get really sick.
“For me, my worst POTS flares were in high school when I was initially diagnosed. I would have to crawl to the shower in the morning because I couldn’t stand and my mum would have to wash my hair for me.”
Lillie’s experience with her illness was hardly ever reflected in the books that she read.
No one talked about chronic illness in fiction. Even when someone did, it was hard to manoeuvre through the tragic and solemn representations of these sick characters.
“We have such a lack of representation for chronic illness,” said Lillie. “And that becomes even more apparent when we go into the fantasy genre, or any genre really.
“A lot of the fiction that does exist is not written by chronically ill authors. And I don’t want to purport the idea that you cannot write about chronic illness if you are not chronically ill, but you have to do a lot of the work.
“A lot of these books that currently exist are incredibly harmful and romanticise chronic illness and terminal illness. And as far as we know, One For All is the first traditionally published YA novel with a main character with POTS – which is alarming given how many people have it.”
This thought lingered with her throughout her life. She had always been one to take control of her own stories. It was a trait she had since she was four years old when she dreamed of becoming a writer. However, the choice was not that simple.
Lillie had given it a shot once already. A book she submitted a few years ago did not seem to sell. The book was made up of an almost all-disabled cast.
The industry on the other hand, was not too kind towards this premise. No publisher thought it was good enough for the market. Lillie was worried. How much different could it then be for One For All?
Who would want to publish a story about a sick female-lead who was almost always dizzy in the head?
“At the end of the day, I realised providing the representation I needed as a teenager, and I still need now, was more important than the fear of having to go through the heartbreak of putting a novel out on submission and it not selling again,” said Lillie.
She realised the sense of urgency needed for someone to tell a story of a chronically ill athlete. And she wanted to do it right.
“So often disabled or chronically ill characters are the side character, or they simply exist to teach the reader something.
“Sometimes, they die tragically in the hero’s arms to teach the hero the fragile lesson of humanity. And so often they are not real people.
“For Tania, I wanted to make sure she was a fully developed, realised person just the same way that I’m a fully developed, realised person.
“Chronic illness can be completely consuming. It’s something that impacts every aspect of my life.
“So I wanted to make sure that I put representation out into the world that showed chronically ill people as they actually are, who are full people who have hopes and dreams and are not cardboard cutouts.”
Initially, Lillie did not even intend for Tania to have POTS in the book. But with so much of this character reminding her of herself – a brave, young fencer – it almost became a no brainer.
“I wrote one paragraph and then I realised that there was no way that I could tell this story without Tania having POTS.”
However, writing about POTS in 17th century France, where the term did not even exist, was hardly a menial task. Instead of the abbreviation itself, the author came up with new ways to describe her character’s symptoms.
Lillie makes Tania refer to her condition as ‘the dizziness’. Tania’s heart was described to beat faster to indicate a rise in her heart rate. Describing blood pressure on the other hand, was quite tricky.
“When Tania is feeling super dizzy or when she stands up, sometimes her feet turn purple and blue and that’s something that happens to me,” says Lillie.
“And it does happen to a lot of other people with POTS because of blood pooling in our extremities. Also talking about how you could have a few good days and then if you overexert yourself one day, you could be in bed the entire next day.”
But everyone’s experience with chronic illness is different. And as one of the first to write of a chronically ill main character in a young adult fantasy novel, Lillie felt an immense pressure on her shoulders.
“I was so worried because I felt like One For All had to be everything to everyone with POTS; which is impossible because there are so many different experiences of POTS,” explained Lillie.
“I realised I just had to write her symptoms true to what my own symptoms were and then just go from there.
“And to know that some people with POTS were not going to identify with the representation that I presented, but that it was authentic to my own experience. And for the most part, I’ve had a lot of readers with POTS say that they’ve really identified with the representation.”
POTS is still very much misunderstood. There is a lot of work to be done to raise awareness around what its patients go through.
In doing so, Lillie explains that this is why labels are important. Although POTS is a more commonly used term now, in Tania’s world, she had to come up with a name herself.
“It was really important for me to have her claim some sort of label because she’s had all these identities forced upon her. She gets called ‘invalide’ [French] a lot. Which translates to an invalid. She gets referred to as weak or broken and for her, to claim her condition and to have a name for it was really important.”
This paralleled the experience of many chronically ill people today, Lillie explained.
Much like in her own life, many people around her did not understand what POTS was or know what it meant, considering that the term was only established three decades ago.
“It is still incredibly difficult to get taken seriously as a chronically ill person, especially as a woman.
“I have the privilege of being a white, chronically ill woman. But when you add in being a BIPOC chronically ill woman or trans woman, all these different identities intersect, and it gets more and more difficult for it to be taken seriously by the medical establishment. So having that label is really important to be taken seriously.
“But it’s also because so many of us have been told time and time again, ‘oh, well, you’re just over exaggerating’, or ‘oh, your symptoms are all in your head’. I remember one person saying to my mum, ‘oh, well, Lillie is just Type A.’ Like what does that even mean?
“We internalise all this ableism that’s forced upon us. So having that term, it’s almost a reminder of no, there is something that’s going on in my body. My experience of these symptoms is valid.”
POTS was not all there was to Lillie – or Tania. She was quite the fencer back in school. Ever since she was 10 years old, Lillie fenced competitively.
But as the only girl in her class, she soon realised there was a link between this reality to what she saw in books and movies.
“When I went to fencing summer camp, we would watch fencing related movies during lunch and a lot of those movies were actually based on books; The Princess Bride, for instance, or The Man In The Iron Mask – which was my first introduction to The Three Musketeers,” explained Lillie.
“But none of the women had swords in those movies and that was something I was very aware of. That absence was very felt as I was sitting surrounded by boys watching this movie that only had men with swords.”
This prompted the gender-bent retelling of The Three Musketeers in her novel. It was almost ridiculous how women would have to sit and watch as the men fought. Surely women can hold swords too? Lillie could not help but to be affected by this, not only because fencing was something that she loved, but because much like her POTS, the sport felt like all she had ever known.
“I’ve had POTS for almost as long as I’ve been fencing,” she said. “Trying to extricate the two is next to impossible. It is something that I love so much that I’ve done for so long. And I hadn’t really written about fencing before at this point. So it was a great opportunity to do so.”
With the addition of fencing to Tania’s character, Lillie now had a responsibility to portray a strong female lead with nuance. Lillie believed that it was never one or the other. Women could fight and fall in love just the same.
“Something that was really important for me with One For All was to show with the four musketeers in the book, that there’s a huge variety of ways to be a strong, young woman,” says Lillie.
“So for example, Théa who is one of the musketeers, is a budding seamstress. And even though Tania at one point says ‘I’ll never trade my sword for a needle and thread’, I wanted to make sure I wasn’t presenting a message where traditional activities associated with women in the past are seen as somehow inferior to fencing, etc. They can coexist within one person.
“You can still be a strong woman if you like sewing and knitting, it isn’t mutually exclusive.”
Lillie also explores the theme of found family in her novel as a trope she says is particularly important to chronically ill and disabled people.
“Found family as an idea as a concept is predicated on acceptance and understanding. And for chronically ill people, it’s difficult sometimes to find acceptance and understanding.
I’m very lucky to have an incredibly accepting family who have supported me immensely throughout my chronic illness. But a lot of chronically ill people aren’t so lucky,” she explained.
“Many of the disabled people I know have found a strong community, families with other disabled people and chronically ill people.
“A lot of the chronically ill people I know, including myself, before we became chronically ill we had certain friends – even best friends. And then after we became chronically ill, those best friends decided to leave and abandon us.”
Lillie writes this same issue into the book, where Tania’s ex-best friend, Marguerite, abandons Tania when she becomes very ill.
“It’s that juxtaposition that makes Tania’s found family so important; and chronically ill people’s found family so important because so many of us have been abandoned by people whom we love and considered friends and family. To have that found family, it’s a special thing.”
As characters with chronic illness make their way into the world of fiction, there is a greater chance that empowering stories like Tania’s are now being offered happy endings as opposed to living by definition of their condition. With Lillie’s book being the first breakthrough within fantasy and YA fiction in particular, there is hope that publishers realise the desperate need to see chronic illness represented in every book and every genre.
“We’re going to have more authentic representation. I hope that readers take away the idea that needing help is not weakness.
“The more that we talk about chronic illness representation in books, the more publishing takes notice.
“Every little bit helps move towards having more accurate representation in books because at some point, there’s going to be a tipping point where we have enough good chronic illness representation, or enough representation written by chronically ill authors, that it’s going to outweigh the negative representation that we’ve already seen.”
The reality for Lillie is much different now than how it was back then. She lives independently with her condition under control.
Life can be just as positive as Lillie’s or as adventurous as Tania’s, chronic illness or not. It is time the book industry accepts that.
If you liked this post then read “We shouldn’t have to experience things to have empathy” – How authors write outside their experiences or From Me Before You to Moby Dick: How books represent disability next.
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Lillie Lainoff
A former Div I NCAA fencer for Yale, Lillie Lainoff is the founder of Disabled Kidlit Writers and the winner of the 2019 LA Review Literary Award for Short Fiction. Her non-fiction has been featured in The Washington Post, amongst other places. She received her MA in Creative Writing Prose Fiction from the University of East Anglia. One For All, her debut novel, was named a Best Book of 2022 by NPR, a Junior Library Guild selection, and a Best YA Book of 2022 by Buzzfeed and Paste Magazine.
Shruthi Selvarajan
shruthi.blotmag@gmail.com
Shruthi is a journalism student with a passion for reading, travel, food and music. She likes to spend her free time at Waterstones or journalling whenever she can. She’s passionate about human connection and relationships in books, so that we can learn to better ourselves and how we communicate with others.
Favourite genre: Contemporary romance.
First time reading about POTS. Chronic illness representation in books is an impactful way to expose and educated people.
Bravo….Shruthi, that artical was a eye opener on what is pot’s….thank you n cheers