When I got ill in 2014, my biggest prerogative was to cure myself.
By then, I had lived with unexplained symptoms for almost 10 years, so a diagnosis – stage 4 endometriosis – came as a relief. It wasn’t “just” painful periods or IBS or me being melodramatic. In fact, it turned out to be closer to a benign form of invasive cancer, overtaking my pelvic organs and bowel.
A diagnosis was something concrete to hold onto. Finally, I had a tangible problem that I was determined I could fix. And of course, why couldn’t I fix it?
When I was diagnosed, wellness culture was booming. Everyone was talking about the power of superfoods, and the gut-brain connection, and holistic therapies.
The idea that I could take control of my endometriosis – something that seemed to be so poorly understood by the doctors I had encountered, and so woefully under-researched by the wider medical community – felt empowering.
Chronic is a brand new podcast from HuffPost UK on how to live well when you’re chronically unwell. Subscribe here.
After all, Ella Mills of Deliciously Ella fame had managed it. She’d outsmarted her own POTS diagnosis with a radical change in diet and lifestyle.
And so I tried it. I bought into those marketing messages with all my earning power and the naivety of someone who hadn’t yet had much life experience. I went vegan and started taking a cocktail of supplements to “support my immune system”. I threw myself into yoga and meditation. I gave up gluten and sugar.
I ploughed all my energies into fixing what was broken, almost bankrupting myself in the process. And it didn’t work.
Within a year of diagnosis, I was back in hospital for a second, extensive surgery, followed by months of radical hormone treatment. But the pain kept getting worse and more incapacitating.
The weight of this realisation was crushing. What did this say about me if my body refused to mend itself? And what would it mean for my life, my job and my relationships?
“Democratising our conversations around health and what it means to live well is long overdue.”
It was only in the years of grief that came with accepting that I probably wouldn’t get better that I started questioning the messages I had internalised about health and wellness, in a society that values productivity over everything else.
When my foray into wellness culture didn’t work, it had felt like a personal failure. What I should have felt was that I had been mis-sold something. What struck me looking back was how self-punishing I had been in my drive for “wellbeing”. Why hadn’t I questioned how self-blaming it is for an industry to put responsibility for illness on the individual? And how convenient it is for those marketing fix-all balms and powders to turn a blind eye to our socioeconomic circumstances?
“The wellness industry offers up a solution to those whose suffering has historically fallen on deaf ears – often women, with chronic pain, fatigue, infertility.”
This increasing commodification of wellness, above and beyond the basic principles of eating well, sleeping enough and getting some exercise, exploits those in the most desperate of situations.
The global wellness industry is now worth £3.45tn, so it’s hardly a surprise that its messaging is so seductive. It occupies a position in the market where the medical establishment fails, offering up a solution to those whose suffering has historically fallen on deaf ears – often women, with chronic pain, fatigue, infertility.
But its sermon of constantly striving to “fix” something, and asking you to part with money in order to do so, is inherently ableist. It sells the idea that if we are ill we are broken, and that health is a lifestyle choice.
And of course, we know that not to be true. In the six years since my diagnosis, I’ve met some incredibly talented, powerful, successful people with amazing stories to tell, who live full, happy lives. They also happen to have chronic illnesses. No one could describe them as broken.
“Where are the tales of success from chronic illness sufferers? I want to hear more of those, too.”
But there’s no room for these people’s voices in our conversations around living well. When I was reevaluating how I could live and work with chronic illness, I was surprised by the dearth of resources on the subject. Yes, there were self-care tips, and legal advice, but I wanted a blueprint for how to live unapologetically in my “new normal”. I wanted to know how I could retain my ambition in my career – but work in a way that took into account I was ill. I wanted to know how to thrive in my relationship, even though I was sometimes bedbound, sometimes often. How could I keep up with my friends if I didn’t or couldn’t go out much anymore? I still wanted all these things for my life, I just knew I needed to do things differently.
Where were the tales of success from chronic illness sufferers? I wanted to hear more of those, too. I knew there must be a way of living well with imperfect health that wasn’t all doom and gloom – after all, 15m people in the UK live with some kind of chronic condition.
So I decided to seek out those stories for myself in a brand new podcast for HuffPost UK, Chronic.
Each week, I’ll be speaking with the writers, thinkers, activists and dreamers who live with chronic illness on what adapted wellbeing looks like for them. And this won’t be a podcast about health hacks, or finding a cure – I don’t want to play into the narrative that so many of us carry, that being ill means you’re somehow less.
Instead, Chronic will be a celebration of acceptance, of perseverance, of the things that do work, for all different people from all different walks of life. It feels vital to democratise the conversation around living well, even if – especially if –that looks different from how Gwyneth Paltrow does it on Goop.
So take a listen to the trailer, here, and join me for the first episode on October 21. I knew I wanted to hear these stories, so I hope others like me will find them just as valuable.
Lucy Pasha-Robinson is opinion editor at HuffPost UK and host of the Chronic podcast.