Being Creative While in Pain: Working with Chronic Illness
Five days later I finally made it back home with one arm in plaster from shoulder to wrist. That Sunday evening I underwent six hours of emergency surgery to reconstruct my elbow, shattered from a slip on ice. The fractured bones came through my skin, the swelling and potential for nerve damage meant an extended stay in hospital.
Two years later, I'm having to accept that I will always have some level of disability, and a reasonable amount of pain in my dominant arm and hand. For the first few months after my accident I was very much in a survival mode. I learned to type quickly one-handed on an iPad keyboard.
When it became apparent that I wasn't going to be able to fix my arm by force of will or effort, I struggled. What was this going to mean for the rest of my life? How do I move forward, and still be that productive and successful person, when I'm typing one-handed and in pain?
Life is messy, and even with knowledge work, sometimes personal injuries can disrupt our productivity. We like to think that we'll be healthy forever, but the reality is that injuries and ailments are often part of our working lives. Yet, when I found myself hampered by illness, I struggled to find anyone openly discussing this issue.
Luckily, as I learned to deal with my situation, I spoke to friends who are also leading hugely productive lives with significant injuries or health challenges. And the truth is, different people work around health ailments in various ways.
Designer Rachel Shillcock is in the UK and able to benefit from the Access to Work Scheme. She received a grant helping her to purchase an ergonomic chair and adjustable desk. These modifications mean she can work for longer periods without experiencing pain due to hyper-mobility syndrome. She noted that, "Working for other people has always been difficult, as even when I’ve tried to explain my difficulties they haven’t fully understood. Working for myself is so much better - I know and understand my limitations and difficulties... I live with a lot of pain, so on a bad week it’s difficult to get comfortable and I find my concentration dips. On a good week it’s easier for me to get comfortable in my home office and I’m a powerhouse with my work."
As digital workers we have many advantages over those working in jobs that require physical ability or long shifts. Our working environments and software can often be adapted. For anyone with a condition that can flare up or relapse however there is always the possibility that it could cause a commitment to be missed, or work delayed.
Meri Williams of ChromeRose has the connective tissue disorder Ehlers Danlos Syndrome. This condition brings a range of symptoms including dealing with constant joint dislocations. She described how on the couple of occasions she has had to miss an event she has been "wracked with guilt" but that, "I'm a lot harder on myself than other people ever are on me though. I've only had to miss a couple of events I was due to speak at, and usually the organizers have been really understanding."
However, for self-employed people being unable to work can be financially problematic as Liam Dempsey, designer and Director of lbdesign, discovered. "In 2013 and again in 2014, I pretty much lost February to back pain issues... I did effectively not get paid for those two months. As a self-employed professional with an employee, that was a very expensive lesson... to learn twice," he explained.
Dean Leigh from Wholething described feeling ashamed at letting clients down during a period of illness where he had to take three months off full-time work. "I consider myself to be professional at work and canceling appointments the height of being unprofessional," he said. "I had to let down a lot of clients I had for years, I felt thoroughly ashamed."
Concerns about letting people down and not meeting commitments are just one of the psychological impacts of an illness or disability. For those of us who have suffered a sudden accident or illness, coming to terms with the new reality can be difficult.
Andy Robinson, Director of Cayenne suffers from ongoing health issues that started out as an antibiotic-resistant chest infection leading to weeks in hospital and months of recovery. He echoed my feelings when saying, "One of the biggest issues—and one that took me completely by surprise—is the way it involves a certain loss of identity. We live in a society that—rightly or wrongly—defines us to a large degree by the job we do."
This loss of identity is something I felt very keenly, in my personal and professional life. A positive aspect for me was that I've gained empathy for the limitations other people deal with, and the fact that illness and disability isn't always something you can see. The hidden nature of many illnesses and injuries can be a real problem in the workplace. A 2008 report in the UK discovered that people with a disability were significantly more likely to experience unfair treatment at work. Employees can find themselves faced with difficult questions about their health from employers but also from their peers, who may believe that they are being given special treatment. Even well-meaning advice and suggestions from friends and colleagues can feel like a nagging prompt that we should be doing something to make things better for ourselves, and get back to work. When you have a chronic illness or an injury, suddenly everyone seems to have a friend who found a miracle cure for a vaguely similar problem.
I asked people whether their goals and plans had changed because of their health problems. Rather than backing off from goals, these issues can actually act as a driving force. As Williams explained, "It's probably accelerated [my goals]. Though I hope that I have many more years (hopefully decades!) of work in me, I have to face and plan for the eventuality that my physical health might deteriorate. So I suppose I'm braver now about taking big roles and challenges, and worry more about how to get the right skills and less about whether I'm 'ready.' I may not have the luxury of time to get ready any more."
For Robinson, his illness had meant a change in goals, and the type of work he was doing. "Instead of building websites, I run a conference about building websites," he explained. "I’m thinking of doing some work advising other agencies on the business and cultural side of running an agency... The thing they have in common is that they are all things I can do largely at my own pace."
He noted that all of the things he was now doing were things he enjoyed, and had wanted to do for a while but that being forced into them "probably robs me of some of the enthusiasm for and pleasure from doing them".
Despite often dealing with very challenging health issues, everyone I spoke to had some positive conclusions and advice to share. I asked Dempsey what advice he would have for anyone struggling to balance work and health, and his response is sound advice even for the healthy, "Simple: health and family first. Focus on serving your family and yourself and the proper work-life balance will come naturally. That proper balance will drive your business success because you will put the right amount of time, energy and effort into everything."
Williams suggested that people should "treat it as just another constraint; you're still able to do great work and to achieve a lot, you just have to figure out how to do it in different ways. Having an illness, condition, injury or disability doesn't diminish you, it will just make your future achievements even more impressive."
Shillcock felt that in many ways she had become a more determined and self-disciplined person through dealing with her condition. She advised that you shouldn't "let your illness or condition define you, but instead define the way that you want to live your life and work towards that."
It would be easy to leave this piece with those statements. We all love a story of people succeeding despite challenges. However everyone that I spoke to felt that the issues of illness and disability were something that should be discussed more often in the creative and technical industry. Even just asking questions about health problems on Twitter caused a flood of responses and emails from people who were dealing with very challenging issues. This is a very real issue that too often gets ignored.
Those of us who work mostly online, who only need a computer and an internet connection, are incredibly fortunate in that we can often get things done despite significant health challenges. We can transform our working environments and use technology to help us. There is no real reason to be tied to a nine to five if a different schedule of working allows for breaks that prevent relapses or severe pain.
My own situation, and those of the people I have interviewed has left me with a question. What does an industry that celebrates long hours, hustle and the constant pursuit of achieving more in each day say to a person who needs to carefully plan their schedule to avoid a relapse of a condition? As we seek ways to be more inclusive to those less well represented in our industry this seems to be another group we can serve. And ultimately, as we all age, we will benefit from the work that we do.
How about you?
Do you or someone you know work with a chronic injury or illness? What have you learned?