In 2017 I received an Arts Council England grant to complete research for my book Sanatorium. Writing a book was the only way I could think of funding a much-needed visit to a water-based physiotherapy rehabilitation programme, which was necessary to help symptoms caused by psoriatic arthritis and Ehlers-Danlos syndrome. So I found myself in the sanatorium of my dreams: a thermal hydrotherapy centre on an island in the middle of the River Danube.
It was a cold October when I made it to the island. There were bridges to the mainland, but I am not able to walk reliably for more than a few metres, and if I use my mobility scooter in the cold, my legs seize up quickly and become incredibly painful. As a result, I was almost completely isolated at the sanatorium. I only left the strange, insulated building when my mental health was suffering so much that the risk to my body began to feel worth it.
Inside, the space was all about luxury. Every day I ate at a buffet piled high with what they called “wellness foods”. I became seduced by the colour and opulence of such lush, fresh fruits, until my collagen-deficient bowels reminded me why I am not a regular consumer of “healthy” fibres. (Wellness is a relative concept.)
On my first day bathing in the eggy, sulphurous water – the sanatorium’s main healing attraction – I noticed the old-world glamour exuded by many of the elderly women around me. They wore full faces of waterproof makeup, diamond earrings and elegantly twisted turbans. Being young and broke, with my self-trimmed fringe and hormonal acne, it took me a while to work out the function of their performative leisure aesthetic. But after a few days of bathing, and a draining physio regime, I began to feel like I was dissolving; putting on makeup became an important practice in reminding myself that I existed.
As many of us remain indoors, I’d love to sell you this as the key to staying well in isolation. Make it fun! Do things to remind yourself that you exist and that you matter. Inject glamour and vivacity into your days, play chamber music during mealtimes. In other words, make prioritising your health and wellbeing a well-curated lifestyle choice!
This isn’t too far away from what the multibillion-dollar wellness industry would like us to believe. Whether we are being told by Gwyneth Paltrow or Instagram influencers, the message is: you are the master of your own health! Choose wellness, not because you need to, but because it’ll make you feel great and look better. Wellness is an aesthetic shaped by primarily young, slender, white women in stylish leggings, usually standing in front of clifftops or inside gyms. It is an unnerving abundance of recipes for pancakes that are secretly made with bananas (#NomNom #CheatDay). It is a petite woman performing a handstand above the caption “Committed to nothing but love!”, in a photo tagging a sportswear brand and the yoga-cardio class available on her new app (link in bio, #namaste).
It is a seductive illusion. Unlike the grandeur of the sanatorium, wellness is supposed to look effortless: anyone can have it if they are willing to make the right choices and dream big. Wellness appears so easily attainable that actual illness doesn’t always compute for those who encourage the idea that health, joy and spiritual gain are things you can buy.
And while wellness booms, vital complementary health services are becoming less and less attainable. Where many European countries use inpatient hydrotherapy to treat rheumatic patients, almost all of the NHS hydrotherapy pools in London have closed. A pool at Guy’s Hospital remains open by renting its services to private patients at £70 a pop. The Budapest facility I attended, part of a group of health hotels, has survived by straddling this complex divide – simultaneously marketing itself as a health necessity and a lifestyle choice. Its vital and more intrusive medical services, such as underwater massage baths, painful muscle treatments, ice-cold cream packs for swollen joints, are screened off in cold, utilitarian back rooms, behind the layers of opulence.
The sanatorium’s wealthier guests had the means to lean into the sense of luxury, transforming medical intervention into something akin to a cruise. They travelled across the world, meeting up with friends to “take the waters” in a host of healing locations. They didn’t have to juggle working or childcare. Although their conditions were – like mine – all forms of inflammatory arthritis, through retiring early and attending regular private treatment, they had managed to completely avoid use of the immunosuppressants, opiates and mobility equipment that I require to function. As we floated on our backs in the mineral-rich water, I noticed that many of the spa’s most glamorous inhabitants were fond of repeating a particular phrase: “I deserve this.”
I’m lucky enough, once, to have made it to the UK’s equivalent to the sanatorium, a rare inpatient physical rehabilitation programme provided by the NHS. Very few hospitals are able to offer such a service, and the waiting list is often years-long. (Right now, of course, they are all halted.) But unlike the sanatorium, NHS rehab is not glamorous. I shared a ward with 16 women. At night, people would wake each other up with cries of pain. Where the affluent women in the sanatorium talked about deserving their health, many people in the NHS system talked about deserving the more punishing aspects of their long-term conditions. They worried about the ways that they might have contributed to their illnesses: by not asking the doctor enough questions, working in physically demanding jobs, even, in more than one case, for having become pregnant before discovering that pregnancy could make their symptoms worse.
During this pandemic, I’ve been thinking a lot about wellness and the nature of deserving. As NHS hospitals struggled to find enough beds and ventilation equipment, priorities were initially made using a frailty index: a numbered scorecard that determines your ability to function based partly on how far you can walk. The people who are less physically or mentally independent were more likely to be denied a bed. People like myself were valued less, in large part because we came loaded with fewer resources to begin with.
You can see this even more starkly as the pandemic has progressed. In England and Wales, ethnicity is one of the strongest risk factors for coronavirus-related deaths, with black people four times more likely to die from Covid-19 than white people, and members of Indian, Bangladeshi and Pakistani communities dying at double the rate of their white neighbours. Presenting wellness as a “lifestyle choice”, in the face of so much structural inequality, perpetuates the dehumanisation of our most marginalised communities. And this is all the more insulting when you consider how often wellness culture’s hottest commodities – yoga, fasting, acupuncture, CBD treatments – have been appropriated, whitewashed and repackaged for profit.
Medical professionals can be quick to dismiss the value of lives they do not understand. In appointments, I have learned to throw down my accomplishments quickly, before the doctor can send me out of the room with no treatment. Where I am successful, it is underscored by privilege: my cisgender whiteness, my class, my weight. Many of the chronically ill don’t come with this hand. Even before the pandemic, they had been used to the medical system giving up on them before they were given a chance.
The difference between those of us who are able to treat feeling well as a lifestyle, and those for whom it feels unattainable, has never felt so marked. I spend a lot of time with chronically ill friends, brainstorming ideas to enable us to reach the healing spaces in which our bodies thrive: books, creative workshops, movies, academic projects. Sometimes this makes me laugh – the hustles we have to work in order to manage our needs. But it’s frustrating to know that my health can be so directly impacted by the amount of funding I am able to access in a given year, and the lack of sustainability in this practice (there are only so many books about a sanatorium you can write).
Ideally, I’d attend something like the sanatorium once a year, to check in on how my body is moving, revisit and build on my daily physiotherapy routine, and tackle the ongoing spectre of chronic pain. My body doesn’t need organic juice deliveries or raw diets, just regular maintenance: a moment’s reprieve in the battle waged against itself.
But for now I am here, in my London flat, in an inflatable bathtub. I straddle the line between brief spells of pretend sanatorium glamour (a washed face, a secondhand kaftan), and days and days of the same pyjamas, battling through an unsustainable freelance workload with chronic hand pain.
Wellness is a seductive idea, because it suggests that we, personally, might be able to use our positivity and focus to chase away the spectre of death. It is scary and overwhelming to remember that our fate and health outcomes could be preordained by circumstances beyond our control. But the biggest lesson I’ve taken from my time researching and writing Sanatorium is that how your body responds to a crisis can depend on any number of external variables. And, to some degree, wellness is something you can buy. You may not be able to pay your way out of an incurable ailment, but staying healthy still comes with a price tag.
