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.
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.”
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.
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.
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’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 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.
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.