On "chronic illness content"

Not everything is made for everyone, and that's ok

One of the biggest challenges of writing about chronic illness online is that the term “chronic illness” is such a broad bloody thing. There’s a wide range of conditions (some of which most of us haven’t even heard of), and an even wider range of symptoms. So saying that I write about “chronic illness” can be as helpful as saying that I work in “international relations” when it comes to specificity.

With that being said, I’m really passionate about what I do, and making information available to people living with long-term conditions (as well as sharing my own experiences in a way I hope is helpful to others). But as I continue to work on my podcast, and spend more and more time writing disclaimers, I’ve spent a lot of time thinking about who am I actually writing for.

I think it’s an important question to ask, because chronic illness is not one thing. Two people with the same diagnosis can have wildly different experiences. And what information is useful, relevant, safe, and interesting to people will vary widely too.

The internet has done a lot of wonderful things in terms of making information widely available, creating community, and all that other good stuff that has allowed many of us to build lives that wouldn’t have been possible had we grown up a few decades earlier.

But it also has its challenges. They’re numerous and well documented, but for the sake of this issue, I think it’s important to talk about the challenge of the universalisation of content, the expectations (from both a creator and audience perspective) that come with it, and what this means for people in the “chronic illness community” when it comes to engaging with content about ill-health online.

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For the last few years, I’ve joked with my friends that I feel like I need to write in disclaimers.

Because for every piece of practical content I put out where I talk about tools and techniques for managing a chronic condition, I know there are hundreds of little caveats that could be made.

Even if I’m just talking about my own personal experiences, I know that just because I don’t like the warrior narrative, for example, it doesn’t mean that others won’t find value in it. And that is totally normal. I have zero problem with people who identify with these things and love hearing about why they do.

When it comes to my practical content, I worry that people will hear a medical professional I’ve interviewed using an example of something that has a time attached to it and feel like they have to be able to do that, or hear an activity that they can’t do and feel like they need to push themselves in order to do it.

But I also worry that people may switch off at hearing a specific example that may not be right for them, but when adapted (or looking at the wider principle), could be really helpful.

For example, as Jo Southall told me in our first episode on Pacing:

“I've delivered the same masterclass to people with moderate to severe ME as I have to somebody in a corporate office to increase productivity and reduce staff burnout. They're the same techniques, but what changes is how you apply them.”

That’s why I try really hard to make it very clear that the information I’m putting out can be adapted and must be thought about in the context of your own body. I also try and help people learn how to go about doing that, because it’s a skill in and of itself.

I want to make it clear that if there’s something that you think might not be appropriate for you, or you know you’d have to push yourself past your safe energy envelope to try - don’t do it.

You are always the expert in your own body, and whether it’s ignoring something completely, doing 1% of it, or figuring out how to adapt something in a creative way, you have to do what is right for you.

But it’s also important to recognise that so many of us have not been taught how to understand our conditions or to safely navigate tools that may actually help. We often have been pushed to do things that are way too much, when a lower level would have been safer.

As a result, we can develop really understandable reactions, which in and of themselves (in my own experience, anyway) can be super beneficial to explore.

But I also think it’s really important for us as makers of content to recognise that it’s literally impossible to make content for everyone. In fact, the content will probably be worse for it.

And as consumers of content, we need to recognise that not everything we see online that is nominally “for us” or “for our community” is going to be right for us. And that’s ok.