If you’re a regular reader, you’re well aware that I live with a variety of chronic illnesses and have since 2001 (although we didn’t know about it at that point, but that’s a story for another day). And ideally you also know that I’m a writer. I’ve written a guide to writing about disabilities, but today I want to turn to a subset of that and talk about writing chronic illness. And I want to talk about both tips from both my personal experience and a great example of writing chronic illness: The West Wing. The West Wing is one of my favorite tv shows of all time, and I personally think they did an amazing job writing about chronic illness.
For those of you who don’t know, The West Wing is about the workings of the West Wing in the White House, focusing on the senior team (Chief of Staff, Deputy Chief of Staff, etc.) and the president. And one of the revelations from the first season is that President Bartlet has multiple sclerosis. Now, to be clear, I don’t know if it’s a great picture of multiple sclerosis because I don’t have that and I can’t speak to the accuracy of that. But when I was doing my annual rewatch in December, I was just struck by how well they portray life with a chronic illness and the many facets of it. So if you’re going to write a character with chronic illness, it’s a great example of what to do.
And you should write a character with a chronic illness! The National Health Council estimates that 133 million Americans have an incurable chronic illness, which is more 40%. 40%! That’s a huge percentage. Keep in mind that this includes illnesses like asthma, which might not bother people all that much. But it also includes illnesses like cystic fibrosis, rheumatoid arthritis, and multiple sclerosis, all of which can majorly affect day-to-day life.
One final note before we get into this: In addition to learning about ways to write chronic illness from this post, be sure to research the specific illness you’re talking about extensively in advance.
While chronic illness can affect every day, it doesn’t always affect every minute – While this was probably done for ~drama~ purposes, the audience doesn’t learn that Bartlet has MS for many episodes of the first season. This is because his chronic illness doesn’t affect the workings of the west wing for a while, not until he gets sick. Now, every chronic illness patient is different, and different people with the same condition can live very different lives, so for some people their illness can affect their entire day, but for others, theirs might only affect it by needing to take medication every day. So keep in mind that your character’s illness might not affect every single minute.
But small things like the flu can majorly affect living with a chronic illness – At the same time, though, illnesses that would be a minor inconvenience for a healthy person can be a huge issue or even life-threatening for someone with a chronic illness. (This, of course, depends on the illness in question.) We first learn of Bartlet’s MS because he gets the flu and the first lady drops everything and flies back to Washington because, for him, the flu could potentially be deadly. For me personally, the flu is super dangerous because I’m on so many immunosuppressants for my RA. Not only could the flu could easily turn into pneumonia, but having it also means that I need to stop taking my immunosuppressants, which can make my pain worse.
At the same time, sometimes what a non-sick person would consider bad is not was a chronically ill person would – I know that this seems contrary, but that’s how the chronic illness life goes. There was a great line in (I think) the last season when Bartlet has a flare on a plane to China. He loses the ability to use some of his limbs for a short period of time, and his staffers aren’t sure exactly what to do. Should they be calling people? Luckily, the surgeon general is with them at the time. When she explains the situation to some of his staffers and these ask this question, she says, “For an MS patient, this is the equivalent of a headache. Who would you want to call if you had a headache?” Essentially, while this situation is definitely an issue, it’s not as much of a problem as it would be for someone who doesn’t have MS. So when you’re writing, keep in mind that the standard for a problem is different for someone with a chronic illness than it is for someone without one.
There are good days and bad days – One of the things I really, really love about The West Wing is that there are so many episodes where Bartlet’s health doesn’t matter at all. When he has bad days, it’s definitely a part of the show. But the rest? Not mentioned at all. This is because people with chronic illnesses have good days, and some even go into remission! Hell, even I sometimes have good days where my pain is moderate and my energy is high. So if you’re writing someone with a chronic illness, they don’t need to be miserable all the time.
There are flares – But, at the same time, there are flares, which is when symptoms get worse for a certain period of time. Bartlet has a couple of these over the course of the show. So even if your character has more good days than bad, they can still have a flare. I think that what exactly a flare is varies wildly depending on the illness, so definitely look into that before writing it in.
Stress can exacerbate it – For many people, going through stressful situations or a traumatic event can exacerbate their illness or cause a flare. Annoyingly, I personally had a flare happen after two different breakups (because why not, you know?). Unfortunately for Bartlet, being President of the United States is nothing but stress. You know how presidents tend to get grayer over the course of their presidency? Well, Bartlet gets grayer and his illness gets worse. His doctors ask him to take breaks everyday, including a nap, to deal with it, and there are discussions among his senior staff about whether or not to bring issues to him.
Some people use mobility devices, but even then, they might not use them every day – As his illness progresses, he starts using various mobility devices. In particularly bad situations, he uses a wheelchair. At other times, he uses a cane. But it’s important to understand that some people don’t do this all the time. From personal experience, I can tell you that there have been so many times where I used a wheelchair but could still walk. In my personal case, I can’t stand for long periods of time or walk more than short distances, especially now because I’m recovering from surgery and still on crutches. This means that I use a wheelchair when I go through an airport, go to a museum, etc. So keep in mind that just because someone uses a mobility device one day doesn’t mean that they have to use it the next.
Sometimes, people hide their illness due to a variety of reasons – Part of the big drama in the first couple of seasons is that Bartlet hid his MS. There are plenty of people who do this for a variety of reasons. Maybe they’re very private or their illness is more sensitive, like endometriosis. Maybe they’re afraid of discrimination, which is unfortunately something that affects many people and worries many more.
People don’t always react well when they learn about someone’s illness – This is one of the reasons why Bartlet hides his: he knew some people wouldn’t react well. There are a wide variety of reasons why people don’t react well. A) They feel like they deserved to know. This is the case in The West Wing. We learn in the first season that around 14 people know about Barlet’s MS, and that includes his family, the doctors who diagnosed him, etc. When Bartlet starts sharing that he has MS, one of his staffers is annoyed that he didn’t know. B) They think that you can’t do your job. This is obviously a big issue in The West Wing because Bartlet is the president, but it’s a real thing that people worry about and deal with even now in 2018. Specifically in The West Wing, people are concerned that Bartlet hid his MS from people, as they should have known when they voted. Part of dealing with the fall-out is that Bartlet spends a lot of time convincing people that he can do the job, so it shouldn’t have been taken into consideration. This leads into the next point. C) They believe things about the illness that aren’t true.
For example, even though it’s 2018 and Google is free, lots of people think that you only get arthritis when you’re older. This is an issue that I deal with regularly: people either don’t believe that I have arthritis or don’t believe that it’s possible that arthritis could affect me more than slight minor pain. Similarly, in The West Wing, people keep thinking that MS means Bartlet is dying, so when they learn he has it, they get very angry because they think that the American people unwittingly elected a dying man. Which leads into my next point.
There are many misconceptions about many illnesses – One of the most relatable moments of this show (for me) is when Bartlet is fed up about people thinking he’s dying. In fact, in advance of the interview and press conference where they reveal his illness, the administration has to essentially prepare an FAQ about MS, one of the biggest elements of it is that MS is not a fatal disease. So when you’re writing a character with a chronic illness, don’t only look into what are actual symptoms of that illness so that you’re correct, but if the illness is a part of the storyline, also look into what people think about the illness that is wrong.Tips for writing about a chronic illness with examples from The West Wing Click To Tweet
Now, that we’ve gotten through all of this … in terms of the show itself and not just the good examples of writing chronic illness, if you don’t like The West Wing …
Watch your ableism! – Ableism is discrimination in favor of healthy people. I’ve written extensively about this, so I won’t rehash this here, but definitely be careful of this in your writing unless, of course, you’re intentionally writing an ableism character. Here are some posts to help you avoid ableism: Everyday Ableism, We Need To Talk about Ableism, What Abled People Need To Know about Disability, Examples of Ableist Language in Everyday Life, On Inspiration Porn.
Hire a sensitivity reader – According to Writing in the Margins, “A sensitivity reader reads through a manuscript for issues of representation and for instances of bias on the page. The goal of a sensitivity reader isn’t to edit a manuscript clarity and logic, although that may be an additional service offered. A sensitivity reader reviews a manuscript for internalized bias and negatively charged language. A sensitivity reader is there to help make sure you do not make a mistake, but they are also NOT a guarantee against making a mistake” (x). I suggest hiring one who lives with the chronic illness you are writing about, as they are more likely to catch incorrect representations. If you would like to hire me as a sensitivity reader for RA, email me! 😉
What do you wish you knew about writing a chronic illness?
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