“We’re innately creative because the world isn’t built for us”: Working in the creative industries with chronic illness

I got the email during a Friday night waitressing shift, eating a baked potato in the chilly staff room upstairs. My application for work experience at the Guardian Weekend had been successful. I ran down to the kitchen and told the chefs, overwhelmed with excitement to spend time at a publication I had dreamt of working for. Once the surprise settled, the harsh reality of accepting this placement meant I would have to live in London for a week and work from 10-6, something that would not be easy for my sick body.

I’ve been living with multiple chronic illnesses for over ten years. This means I experience a range of unpredictable symptoms such as debilitating fatigue, muscle and joint pain, headaches, nausea, dizziness, cognitive problems, and more. Most days I wake up in the afternoon, drenched in heavy fatigue with painful joints, and lie in bed for an hour or two before getting up. The care my body requires heavily impacts my ability to work, as my productivity is not something that can be relied upon.

After graduating with a degree in journalism, I have been unable to find a relevant job that is accessible to me. I can’t work in the morning, or for long hours, and require a flexible, understanding employer that doesn’t make me feel guilty for having these needs. All I could manage at the time was a part-time pub job, working three to five-hour shifts, due to a spell of not-terrible health. I realised that as a chronically ill person with an invisible disability, the only access I had to the industry was through freelance opportunities or short-term internships, where I would overwork my body but plan for recovery time afterwards. Graduate schemes and entry-level roles all demanded full-time hours, and the small number of part-time jobs I did find consisted of morning work, or were located in cities I couldn’t afford to live in. I rarely hear back from local part-time jobs I apply to, ones where I mention my disability in the application.

A common barrier for chronically ill people who want to work in the creative industries is the one-size-fits-all structure of office work and the frequent subconscious assumption that all employees are able-bodied. Freelancing, a touted alternative, requires a constant hunt for work, with no guaranteed income or stability – not ideal for disabled people, one in five of whom face extra costs of more than £1,000 a month. How can a creative career be pursued if your industry leaves your behind? How do you decide if the consequences of working jobs that are not sustainable for your body are worth it?

While physical adaptations such as working from home are important, the mental strain of being misunderstood, disbelieved, and gaslit by doctors also becomes a hefty burden. It causes disabled people such as Hayley to feel less welcome in spaces that demand physical labour and don’t show understanding that not every body works in the same way. I’ve found myself projecting past experiences of being disbelieved and dismissed because of my illness onto new or potential employers. In the past, this has caused me to not ask for necessary assistance out of fear that I will be treated with scepticism.

The unpredictability of chronic illness means it can vary by the day and the hour, but also throughout the course of several years. Ceramicist and illustrator Grace Wilson was diagnosed with arthritis when she was eight, but says she’s been lucky to have periods of decent health. “For the majority of my 20s, everything was pretty good,” she says. However, now Grace is experiencing a flare-up of symptoms that began in 2018. “I had that really good period and I didn’t have any trouble, so I spent this year getting used to something completely different,” she says. “It’s really not gone down so well.”

Grace’s fingers are badly swollen, restricting the full use of her hands, and she lives with chronic pain in her shoulders and knees. “I basically haven’t made anything or done any work in about a year,” she says. “It comes in waves, but this is quite a long time now that I haven’t done anything.”

Working a full-time office job to pay the bills, Grace struggles to find the energy to make creative work and feels she has less inspiration since she doesn’t do as much as she used to, explaining that “there’s nothing to write or make work about because I just kind of get out of bed and go to work.”

For artists like Grace, a creative career can be put on hold due to the sudden demands of illness. This is frustrating, not only because you are unable to pursue your passion, but you also have no idea when you may be able to again. For now, Grace finds her office job attainable, consisting of relaxed, non-physical work at a university.

She argues that offering remote work is especially relevant to the creative industries because you often just need a computer to work. “Being in a workplace is often not the most conducive place if you need to be illustrating or writing when you have a million people running around you,” she says.

With my own projects, I became determined to create an environment that I would want to work in. I decided to create a magazine in 2019, realising that the years of work experience I had envisioned were not going to happen. I created Sick, a thoughtful magazine by chronically ill and disabled people, earlier than I had anticipated and with less experience than I had hoped for. Now I work from bed, often late at night, with an electric blanket beneath me, adhering to no schedule but my own. I use hard and soft deadlines, let contributors know they can always have more time, and allow everyone involved to work at their own pace – none of this has been difficult to implement, and I have yet to encounter any problems.

Key attributes that can help make work manageable for sick and disabled people include remote working, flexible hours, open communication and soft deadlines – but ultimately, physical access, empathy, and understanding are all crucial. Whether you run your own business, work with freelancers, or organise exhibitions, there is always space to ask yourself how you can be more inclusive and accommodating to those around you. If there are no disabled people working alongside you, think about why that may be. Is your workplace wheelchair accessible and designed with non-able-bodied people in mind? Is there seating available at the event you are planning, and is this information included in your promo? Are you a disability confident employer who includes flexible working options within your job descriptions? There are a variety of things to consider that can make a huge difference for disabled people, requiring no more than empathy and thoughtful consideration.

Emily also stresses the importance of having representation in the creative industries, calling disabled people “the original DIY-ers”. “We’re innately creative because the world is not built for us,” she says. “A lot of people say that the only reason we’re disabled is because people didn’t think about us when they built our society. We wouldn’t be disabled if we had accessible spaces, we would just be another person. I think having disabled individuals in creative teams is a huge asset, and is grossly underestimated.”