It’s 9 p.m. on a Wednesday night, and The Hare on the Hill, the freehouse I run in Bristol, is filling up with drinkers. The monthly folk session is on, and the sound of lilting guitars, fiddles, and mandolins drifts out through the open door and down the road. Locals laugh and chat with the barman—tonight, my partner and co-landlord Ed—who recommends beer from our 15 taps. But I am not among them. I am upstairs in our flat above the pub, in bed, with my eyes closed and the curtains drawn, quietly listening to a podcast because light and sound will bring on a migraine. I hear muffled laughter through the ceiling, but try to stay as still as possible.
Together, Ed and I have been running The Hare since early 2019. As is often the case when starting a business, we worked every possible hour ourselves when we first took over the pub. But only a couple of months after taking it on, and after a year of testing, I was diagnosed with chronic fatigue syndrome, or myalgic encephalomyelitis, commonly known by the acronym CFS/ME. CFS/ME is thought to affect 250,000 people in the U.K. and 17 million worldwide, and is a disabling neuroimmune illness characterised by widespread pain; migraines; sensitivity to light and sound; cognitive problems (known as “brain fog”); and crucially, debilitating fatigue that is not improved with rest, as well as a host of other symptoms. “Fatigue” goes beyond tiredness; it is a whole-body weakness that feels a lot like coming down with the flu, except that it happens every week.
Anyone who is familiar with CFS/ME will be able to see what I couldn’t at the time—that I was heading for a significant crash. It was only when lockdown struck and the pub closed, and I was finally forced to rest, that I realised how unwell I had become. Once we reopened, I stopped working behind the bar completely, something I had done almost consistently since 2007.
Running a pub is an inherently social job; it’s what draws many publicans to the industry. It’s also very physical, involving long shifts on your feet, taking deliveries, cleaning, and changing barrels. Unfortunately, these requirements are not conducive to the essential rest that is needed to avoid relapse with CFS/ME.
Rest itself is a slippery concept, especially for those who once lived active lives. One defining feature of CFS/ME is what’s known as post-exertional malaise—a flare in symptoms brought on by overexertion, whether physical or mental. Tony Britton from the ME Association recognises that “generally, this means that people with the illness have to be careful not to over-exert themselves, mentally as well as physically. If they do, they can pay the price with a flare-up of symptoms 48 hours or so later, which can set back any chance of recovery by days, weeks or even months.” Personally, I can often feel a crash coming on by the presence of a slight pressure in my head that slowly builds into painful dizziness and brain fog.
While in this phase, I struggle to understand what’s being said to me. Certain words float just out of reach, as if a connection in my brain has severed. During a recent conversation with the pub’s chef while I was in the onset of a crash, I forgot the word for knees, and could only point and ask, “What are these called?”
When a crash comes on, I have no choice but to withdraw—to slink back to my familiar bed and wait for it to pass. It is there that I listen to the comforting—and sometimes stressful—sounds of the hubbub of the pub below me. I’ve learned to distinguish whether certain regulars are in the bar by the intonation of their laughter. Since living above the pub, I’ve become well acquainted with the seasonality of the two sycamore trees and slice of sky that make up the view from our bedroom window.
But there is, too, constant guilt about being so much in bed in a society that values activity, and a strange form of shame that isn’t helped by the widespread misunderstanding around chronic illness and invisible disabilities.
My experience is mirrored by others working in the craft beer industry. Emma Cole, who also has CFS/ME, has worked for several U.K. craft beer breweries in both hospitality and HR roles. She’s found understanding and awareness of chronic illness within the industry lacking.
“I find that nobody understands. I used to get called on my day off because I was the only HR person and they didn’t know how to deal with something, and I’d end up working past my boundary because I’d be encouraged to, and then have to take time off sick,” she says.
Charlotte Cook, who has lupus and has worked as a brewer for 12 years, has also experienced this lack of understanding around chronic illness and disability. “The amount of holiday days I’ve had to use to go to the hospital and things like that, it really wears you down because it’s almost as if you’re not allowed to be ill, or [as if] you take too much time off without [employers] understanding that it’s not going to go away, and you have to take that time in order to live.”
Many businesses—not just in craft beer but in wider society—would benefit from the free resources available from organisations like Not Every Disability Is Visible, which provides free training and resources, including both employee and management/HR materials. However, in Cole’s experience, even when these materials are available, many employers simply don’t utilise them.
“I don’t think any employer has taken the time or the effort to understand what my condition is,” she says. “I worked in an HR role, and I kept documents for any time somebody had a health condition in the business, and I’d go and learn about it to try and make things easier for that person and provide resources for their team members—but I’ve never felt that anybody would do the same for me.”
Cook has also found a lack of flexibility within the industry. “I’ve never had any adaptations made available to me at work. The fatigue that you get with lupus can be quite debilitating, and you’re still expected to do night shifts and late shifts even though you’re dead on your feet. And adaptations for helping to lift things are hard to come by. If somebody had a broken leg they would be given adaptations, but if somebody has something that employers can’t see, or that seems so esoteric that they don’t understand, then they can’t visualise how to provide adaptations.”
These experiences are particularly pertinent when considering that the 2010 Equality Act was put in place to ensure that employers have a legal duty to make “reasonable adjustments” in the workplace for disabled employees. Such adaptations would help ensure that those with chronic illnesses aren’t required to use personal leave to attend medical appointments, or indeed go on long-term sick leave. Tony Britton from the ME Association recognises that it is a struggle that many chronically ill people relate to.
“People with ME who do manage to earn a living mostly keep quiet about the sacrifices they have to make to stay at work. Their secret is that they go home to rest and then give up their social lives to conserve whatever energy they have left. It’s a lonely, isolated life for many—but they’re desperate to survive in the workforce.”
If COVID-19 has brought greater awareness of chronic illness, it is that many now know how indiscriminate it can be. Almost everyone knows someone who has been affected by long COVID, recently renamed “Post-COVID Fatigue Syndrome” for its similarity to CFS/ME. That in itself is a striking change; for decades prior, scant attention has been paid to such conditions, to the extent that ME used to be referred to as “yuppie flu”—a stigma that persists today, sadly, including among some healthcare professionals. One recent study found that the majority of people with long COVID have experienced stigma due to the illness.
That said, both Cole and Cook agree that at present, COVID has done little to address wider perceptions of chronic illness within the craft beer industry. “I think in the general population there is [greater awareness], but I still think [in brewing] there’s an attitude of you just buck up and get on with it,” says Cook.
Cole concurs. “I’m hoping that it has brought some awareness to some people. I’ve not experienced any change yet, but I’m hoping that it will bring about some more awareness through the industry.”
In terms of provisions for craft beer workers, Emma suggests accessibility is a key factor for making sure those with disabilities can better enjoy industry events like beer festivals. “I used to go to every single beer festival and know everything that was coming out, and I just don’t have the stamina for all of them now. The amount of times I’ve been at places and there are not enough seats around, or there are not enough places to rest, and if you do find a bench then you’re away from where all the action is.”
Like me, Cole has also found solace in being self-employed. “I think I’m able, now that I understand my condition and put boundaries in place, and essentially working for myself in the industry now, I’m able to go, ‘This is what I can handle in a day, this is what I can handle in a week, this is how I space it out.’ I can keep on top of work that way.”
It’s a situation I relate to enormously. Within my role, I’m lucky to be able to set my own hours; I can arrange to stay in bed if I need to; I can even work from bed, and often do, which is something rarely available to those who work in other settings. The flexibility of my own working life is also down to my amazingly supportive partner, who enables me to rest when I need to. But it shouldn’t take becoming self-employed to have a chance of being well, and that’s something both the craft beer and wider hospitality industries need to address. Chronic illness and invisible disabilities are still little-understood by many employers, and without adequate provision of things like sick pay and disability benefits, this is unlikely to change any time soon.
But there are positive developments as well. DeCode ME is a groundbreaking study that launched in the U.K. this September, and which explores the potential of genetic markers for CFS/ME from 10,000 sufferers, giving hope for real recognition and treatment of the illness. This is the first time a study like this has ever been conducted, which, given that there are 17 million sufferers worldwide, is quite remarkable, and really does demonstrate the extent to which CFS/ME has been overlooked for decades. Even though this attention may only be coming now because of the pandemic and the widespread effects of COVID-19, it’s a significant development.
Ultimately, health is precious, and also precarious. And although there is a grief that comes with becoming chronically ill, accepting these changes and health limitations is crucial to moving forward. Battling against the memory of a previous life leads down a dark path. And so, while at the moment I can’t work behind the bar in our pub, and must save my energy for gentle exercise, or some pub admin, or writing, I hope in time to get to a place where this gets easier. And I hope the industry around me will continue to evolve to make it easier, too.
Words by Liz ChambersIllustrations by Colette Holston
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