On "chronic illness content"

UNLOCKED: 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.

If I’m being entirely honest, whenever I think about “who I’m writing for”, it’s mostly me 12 years ago.

The state of the internet was very different back when I was first diagnosed with EDS, and bar some helpful information from charity websites, it was mostly forums (not for me) or Facebook groups.

I was 21, and relieved to have a name to put to what we otherwise thought was just my “weird body”. I thought with a diagnosis would come appropriate care and treatment, something that would stall decline and help me find ways to live my life in the best way possible. And it was with that attitude and expectation that I joined a bunch of EDS Facebook groups.

Whilst I can’t remember specifics about what I asked, where I went, or who I engaged with, my overwhelming memory is of a cacophony of voices telling me to expect decline, that a diagnosis meant my life was over and that, compared to them, I didn’t have it that bad. It was something that I saw time and time again in response to questions that people were asking on the wall.

I wasn’t scared about my diagnosis until I joined the groups, but seeing this stream of pain and fear and anger, I became worried about my future and that very much coloured my early 20s.

Now that I’m older, I have a lot more sympathy and understanding than I did then. A lot of the people in these groups were diagnosed in their 40s, 50s, or 60s. They’d had lifetimes of illness and injuries without any support or recognition. Their lives were hard and they were struggling. Of course they were angry, and that anger seeped out in desperate cries online - but it also manifested in a lot of toxic behaviour that was then projected onto other people (I’m sure, in many cases, unwittingly) that I found incredibly unhelpful.

What I needed was practical, tangible support with how to figure out how to enter adulthood with EDS. Not being told or passively reading that basically everything in my life was going to go to utter shit. I’m sure it existed somewhere, I just never found it.

I went to an in-person support group as recommended by my doctor, but I left halfway through - it was just a circle of people talking about how hard things were. Again, whilst there is a time and place for this (a support group being one of them!) it wasn’t something that I needed or found helpful at the time.

What each of us need from support groups is very different - a place to vent, a place for validation, etc. For me, it was practical stuff. Yes, talk about the challenges, but within a productive, practical framework.

Annddddd here is my disclaimer brain coming back in: again, I want to make it very clear that if this type of thing is helpful to you, then that’s great! I understand! But it’s just not for me. etc etc etc.

When it comes to what we need from online content or support groups, there are a lot of things that need to be taken into consideration, including (but not limited to):

• Diagnosis

• Symptoms

• Severity of each symptom

• Background

• Personality (something which I don’t think we talk about enough, btw)

• Financial resources

• Access to care and support networks

My approach to chronic illness is something that won’t be for everyone, for a whole raft of reasons, and that’s ok.

I recognise that the only experiences I can speak to are my own, and that I have been extremely fortunate to have access to resources, private healthcare, and a loving support network. This cannot be separated from how I’m able to think about and manage my health.

I understand that compared to some people with chronic illness, I am able to do less. Compared to many others, I can do so much more.

One thing I often see online is…hmm…what’s the best way to put this? There can be a lot of frustration and anger at seeing content made for people with the same condition as you, but who have different experiences. This is especially the case with conditions that can have such wide and nebulous symptoms.

And I totally understand where this comes from. If you’re so severely ill you literally can’t do anything apart from scroll on Twitter in a darkened room (if that), of course seeing people talking about figuring out how to do more and more things is going to be extremely difficult to see.

Seeing people making improvements, seeing people have access to care and support that you haven’t had (and totally deserve) is going to be difficult.

People who have really tough lives, who have been made worse because of bad advice are understandably going to be very clear about what kinds of things they find helpful and what things they find harmful.

But I think it’s worth recognising that whilst all of that is absolutely valid, it doesn’t mean that just because a piece of content isn’t made for the person who is suffering the most (or conversely someone who is able to live a somewhat ‘normal’ life - for want of a better word) isn’t useful to someone who isn’t you.

Of course there is content out there that is actively pseudoscientific and harmful. There is also content out there that means well but doesn’t quite pitch it right to its intended audience. There’s also content that may be life-changingly positive for one person, and actively harmful to another.

The challenge of being online is we have very little way to sort through all of this, and we can be exposed to all of it. All the bloody time.

This reminds me of a conversation I had on my podcast with Dr. Gavin Francis about rethinking the concept of recovery:

“I realised that a huge part of the skill of being a good OT or a good physio or a good doctor is gauging what kind of patient you’ve got in front of you.

What kind of thing do they need to hear? What do they want to hear? What are they capable of hearing? So just as I’ve got some patients who see me purely as a kind of guardian of scientific knowledge, I’ve got others who see me as just a conduit to specialists. I’ve got others who see me as an arm around the shoulder and a gentle chat. I’ve got others who see me as a kind of collaborative partner.

And if you try and be a sort of guardian of scientific knowledge to somebody who wants an arm around the shoulder, you’re going to be the wrong kind of doctor and vice versa.

When I hear about consultations that have gone really, really wrong, in the past, I’ve occasionally been tempted to think, well, that’s been just an incompetent clinician. They haven’t been appropriately sensitive. And increasingly when I hear some of these stories now, I think, actually, maybe they behaved in a way that would’ve worked for one patient or maybe worked for the patient that they saw before them in the clinic, but it didn’t work at all for this patient. And so what they’ve failed in is adequately gauging what kind of consultation this needs to be in order to be effective.

And there are some rubbish doctors and nurses out there, but my experience is, most of them are really highly committed professional people trying their best in a resource-limited system. And they are usually trying their best, but they may often, and regularly I must do this, misjudge the way to approach a particular consultation, which is tragic as you’ve just outlined. If somebody gets set off on slightly the wrong trajectory right at the beginning, it can colour their experience for months or years even.”

And I think this applies to content, too.

Because here’s the thing: our experience of our own condition can fluctuate dramatically and the tools we need to help manage during those times can be very different. And where we turn for help, and the advice we need, will be different too.

Our experiences of being bed-bound are not the same as when/if we’re able to start engaging with the world again. They require different skillsets to cope with. Do they invalidate each other? Absolutely not.

Likewise, the way I choose to manage my conditions are very much based around my own life and personality. The things that I need for my mental health are the total opposite of some people I know (and in fact, if people were to talk to those people in the way I need to be talked to when having a hard time, it could be actively harmful!)

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So where does this leave us? Realistically, I think there are some important things that need to be taken into consideration.

On a personal level: It is my job to make it clear that my content is not for everyone. It’s not possible to rank things by number (everyone who is impacted x out of 10 or lower), but I want to be thoughtful about what I put out, the role my content can play, and to recognise that my experiences are just that, my experiences.

When I work with experts, I think it is important to give caveats and disclaimers where appropriate, to help people recognise that their own bodies are unique and whilst my content is there to (hopefully) be informative and interesting, it’s not a blueprint that we can just print off and follow.

But as consumers of content, we also have a responsibility to recognise that it’s ok if something out there that isn’t for us, and it doesn’t mean it won’t be helpful for other people. Learning how to engage with something with a curious eye and evaluate whether it’s for us or not is a long, slow process that takes experimentation. But I think it’s vitally important.

And this is hard, right? We’re inundated online with tips, tricks, and “cures”. I think it’s a natural thing, especially in the early days of being sick, to go online and look for help. If anyone has the same condition as you, you want to listen to what they have to say. You hear about their medications, their alternative practices - anything. You’re willing to try or do anything it will take to feel better. I know, I’ve been there. Anyone who commented on my Instagram with a tip during my foray into wellness had as good a chance as anyone at influencing the next thing I’d try to fix myself.

Conversely, if you’ve been harmed or you’re having a particularly difficult time, hearing anything that’s counter to what you believe (generally) or know to be safe for you can feel like an attack. Even if you’re just reading it passively on Twitter on Instagram.

It’s important to recognise that there is space for all of us. What is useful and motivating and validating for one person may not be for others. Someone whose content you love may have the odd post that feels very counter to how you approach things - that’s fine.

We are all human, and that means we are complex and contradictory and confusing. What we like one year may be different the next, and what works for our condition (and how it impacts us) may change too.

We also need to understand that individuals cannot represent everyone - and we cannot expect them to represent us perfectly. They are individuals. And within the chronic illness space, often very tired individuals who are spending their time sharing things to try and help others.

It’s why it’s important to consume many different types of content from many different people.

I will do my best to contextualise the content I put out. I never want people to think I’ve figured it all out. Because I don’t have all the answers (I don’t think anyone does, really) but I do like to explore, talk to experts, and share my own personal experiences. And I hope there’s value in that.