"Anxiety is like a hyperactive toddler, I think": A Conversation with Frances Ryan

Dr Frances Ryan is a Guardian columnist and the author of Crippled: Austerity and the Demonisation of Disabled People. Over a few days, we had an email conversation about how disability and chronic illness interact with health anxiety, as well as what needs to be better understood about these issues. I hope you take the time read it all — Frances is one of my favourite writers full stop, and I think she's a very important voice on these subjects.

Caroline Crampton: What are your associations with the word "hypochondria"? 

Frances Ryan: I think like most people I’ve always understood hypochondria as meaning someone who worries excessively about their health (the implication being that they aren’t actually ill). But as someone who’s both a woman and a disabled person, “hypochondria” has always felt quite a loaded term to me and a reflection of how certain people - typically women and minorities - too often have their health concerns dismissed. That isn’t to say that health anxiety isn’t real, of course - who amongst us hasn’t put headache symptoms into Google and decided we’ve got a brain tumour? - but that I think it is important to view it through the lens of wider attitudes to disability, mental health and gender. 

For my upcoming book, I’ve been wading through a lot of research that shows women with debilitating, long term disabilities are still routinely told by doctors that their symptoms are essentially “all in their head.” You only have to look at current media coverage of out of work sickness benefits, or the headlines about “fashionable ADHD” or how some politicians discuss the rise in mental health conditions, to see how built-in our culture it is to disbelieve sick people and how acceptable that’s said to be.

CC: Do you feel like health anxiety is something you recognise from your own life? 

FR: My life with health has really been in two parts. From my childhood to mid-twenties, I had a no fuss attitude to my health. Borderline blasé. My disability meant I regularly got very ill with colds and flu and in retrospect had some pretty traumatic times, but it made me resilient and gave me a sense of perspective. As soon as I’d got over the latest bug, I didn’t look back. I didn’t worry for a second about my body. I was just grateful it was doing what I needed. When I became chronically ill (with post-viral fatigue) in 2018, however, my relationship with my body and health definitely changed. For the first time, I was experiencing symptoms that didn’t get better but also fluctuated in an often unpredictable and highly unpleasant manner. And for the first time, perhaps unsurprisingly, I experienced anxiety about my health.

I think health anxiety is quite unique for chronically ill people. Anxiety implies something irrational but with long term sickness, you *are* actually ill. It’s quite rational to think and worry about how you’re feeling. But it doesn’t mean your brain is always giving you an accurate depiction of what you’re experiencing or that you’re not excessively worrying about a symptom. It can be quite hard in that context to get the balance, I think. You might be catastrophising your pain spike but the pain is very real. How do you tell your brain everything is okay when (at least on some level), it actually isn’t?

CC: During the time you've been studying and writing issues surrounding health, have you observed any major trends or changes in how people who aren't the "norm" — whether through gender, race, disability or another factor — are treated? I'm interested in whether we're making progress, or whether the same assumptions are still be repackaged (such as with phrases like "fashionable ADHD"!). 

FR: I’m an eternal optimist and like to believe society is making progress, despite all evidence to the contrary. But I must admit the way we - in Britain, at least - talk about health and disability does seem to be stuck in a loop and not the good kind. When I first started in journalism in 2011, the Coalition and right-wing press were perpetuating highly negative ideas about disability and illness: that hordes of people were faking and doing so to get out of work and access free money. Over the last twelve months, as record gaps in the labour market have timed with ongoing drops in living standards, much of this rhetoric has returned. Seeing those front pages come round again has felt deeply depressing. Editors may as well have re-printed the ones they used a decade ago. 

I think there has been progress in other ways, though. For all its faults, social media has in many ways democratised health. I follow chronic illness accounts on Instagram and am greatly comforted not only by their content but the fact this group now has a means to share their stories, in what used to be hidden behind the bedroom door. It’s certainly true there’s less stigma around mental health but without the funding for mental health services, that gain does seem rather hollow. Elsewhere, I think the rise of long Covid has led to some understanding of post-viral illness - compare this news coverage with what ME patients have had for decades - but we still have uniquely negative and disbelieving attitudes to “invisible” conditions. Society’s response to someone with a heart attack is very different than someone with fibromyalgia.

CC: I preface this one by saying I get asked this a lot and always find it hard to answer. But are there any techniques or tactics that you've find help when you're trying to navigate that balance between pain and anxiety about the pain? 

FR: I think the best mental health strategy I’ve found is a physical one, which is learning my limits and how my body now works. If I push myself too far, go beyond the times of day I can work etc or go beyond how long I can do something, I know that’ll increase my symptoms. So staying within those lines, so to speak, not only helps my body but helps my mind not get overwhelmed. 

Of course, you can never fully control pain or any other symptom. For my upcoming book, I spoke to various experts about how to deal with the mental impact of health problems. I think the biggest thing I took away was not squashing your feelings. Yes, rationalise them - tell yourself all things change and this will ease in time, that pain is a natural part of having a body and not a threat - and do things that make you feel better. But also, don’t give yourself the obligation to feel okay when you’re not okay. If you’re in a pain spike, it’s completely natural to feel anxious. Who wouldn’t? Giving yourself the right to feel that - to be human - really does let the feelings pass faster, as the cliche goes. Anxiety is like a hyperactive toddler, I think. It just wants some attention. And maybe some chocolate and drugs.

CC: Is there one thing about having a chronic illness that you wish people who have never experienced it would understand better?

Chronic illness is definitely something that’s widely misunderstood. I think it’s partly ignorance. Unless we’ve been chronically ill, it’s really hard to comprehend that there are people who feel ill - many, severely so - pretty much every single day of their lives (and that these symptoms fluctuate). And it’s partly the fact many - not all - people feel very awkward about talking about health beyond the flu or a broken arm. 

If a friend or loved one is going through a long term illness and they’re not socialising with you right now, know that they aren’t being rubbish. They haven’t stopped being your friend or in turn, needing you. Their health is just a bit shitty. So, stay in touch. It can be hard to know what to say and sure, there are things to avoid! Don’t ask someone with a chronic illness if/when they’ll feel better. Don’t tell them that you’re jealous and wish you could lay on the sofa and watch TV all day. But really, there’s no magic words. Just being there is enough and will mean a great deal. Check in with them. Ask how they’re doing. Send a funny TikTok. Invite them to events whilst saying you understand if they can’t be there and will miss them. Your loved one is going through something that can be incredibly hard. But they are still the same person, albeit with a body that’s being an arsehole. 

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