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Uncategorized

Being Creative While in Pain: Working with Chronic Illness

People everywhere work with chronic illness or injury. So why don’t we talk about it more?


When I stepped outside in running gear on a snowy January morning two years ago, I expected to be out for two hours or so. I was marathon training, the “long slow run” each Sunday a foundation of my journey to run my first marathon. Snow or no snow I needed to get that run done, so I could get on with the rest of my to do list for the day.

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.

Life is messy, and even with knowledge work, sometimes personal injuries can disrupt our productivity.

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.

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.”

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.

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.”

“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.”

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?

Comments (14)
  • Maria Rapetskaya

    As someone who’s 100% independent, serious illness or injury, or worse, something chronic, frankly terrifies me. As a business owner, I’d be practically ineligible for any benefits, nearly requiring dissolution of business, etc. (in so far as I’ve even been able to interpret the cryptic info that accompanies our disability insurance policy.) So, while being independent would naturally allow me greater flexibility and room for adaptation to continue working – once I COULD again, it’s the financial repercussions that frighten far more.

    • roc thomas

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    • http://aliciahurst.com/ Alicia Hurst

      Hey Maria, I’m also 100% independent, and I bought income protection insurance for the first time at the end of the year. It took me a lot of googling to find a company that would accept me, but I ended up with Combined Insurance, and it’s totally affordable, too. On their website, I think it’s under “Short Term Disability Insurance,” but I could swear my policy was called income protection, so my plan might not be listed on their website? Anyway, it’s worth a short to contact them! I have no affiliation with them, but neither have I ever had to file a claim, so the only person I’ve dealt with there was in sales. Anyhow, hope this helps!

      • Maria Rapetskaya

        Thanks Alicia! I’ll check them out. All the quotes I’ve seen before were far too high for the protection they offered, but perhaps these guys are it!

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  • Catherine

    I was diagnosed with rheumatoid arthritis a year ago and it’s affected my work quite a lot. I took out income protection insurance about ten years ago when I started contracting. Although I am not incapacitated, it’s reduced my stress knowing that I have that insurance and I’m covered if things get REALLY bad. I’m self-dependent so income protection made more sense than life insurance. My current colleagues are really understanding and while I feel the guilt thing a lot when I just can’t get out of bed and have to miss a day, they don’t have a problem with it. When I told a friend I felt like I wasn’t working to 100% capacity, she replied that I was, it was just that the disease has reduced my capacity. I found that a really helpful way to look at it.

  • Raj Daniels

    Rachel, your article really hit home with me. I recently injured my leg on a ski trip and have been experiencing a high degree of pain. Sitting at my desk is causing all the blood/fluid from the inflammation to gather in my ankle causing additional swelling and discomfort. Just yesterday I was telling my wife how fortunate I am that this pain is temporary and how difficult it must be for the chronic pain sufferers out there. Yes, the doctor has prescribed some really ‘good’ medication but they cause me to be in a fog and have other side effects too.

    I have true empathy for those that continue to struggle with chronic pain situations and are still required to perform and compete with those that do not. Let’s all be more considerate and remember that you never know what people close to you might be dealing with.

  • Fanny Brice

    I have had diabetes since the age of 6, hashimotos since 13, rheumatoid arthritis and neuropathy from diabetes since around 30. Looking at me, you can’t tell anything is wrong. Neither can you tell from my funny personality. I never wanted my diseases to be an excuse so always put a lot of effort into making sure my work was extra top notch.

    Earlier in my career, my bosses were caring and watched over me and my diabetes. However, times have changed. Over the last 7 or so years, my bosses could care less and have no understanding towards chronic illness. I actually could have had a strong discrimination case against one of them who said “When you told me about your illnesses I thought you were giving me reasons why you weren’t going to do your job.” Thus, she always expected I wasn’t and i had to show documentation to prove otherwise. My reply to her: “I told you so you’d know what was wrong if you ever found me passed out from low blood sugar.” Times have changed, and it’s sad.

    I’ve learned that with chronic illness, if people can’t see it, they often don’t understand the severity. And, fatigue is a major obstacle in the work environment for those with chronic diseases. Lastly, and I’m still trying to learn this, don’t feel guilty when you have to do less at work in order to help your body.

  • Richard Halford

    My father was a kidney transplant patient for 23 odd years and when asked how he was he would invariably reply “pressing on regardless”.

    2007 was a tough year, I was diagnosed with Chronic Fatigue (CF) having just moved to the UK to be with my gorgeous wife, I nearly lost my Dad and I was unemployed for that year. CF is insidious as it is ‘invisible’ and you just look lazy and in my case sound like you are drunk – not a good look for an interviewer, employer or client, yet you are perfectly healthy and capable of functioning like a normal human being. Buy you have no batteries – they have taken out and you sit there like a broken toy.

    Somehow I got a lucky break on a good day and managed to land a senior consulting role with no prior consulting experience. And I had no idea what I was letting myself in for… That was an incredibly tough first 6 months, and that was before the work day even started. In the last 8 years I have learned mental, emotional and physical coping mechanisms, to be open and sometimes uncomfortably honest with myself, my family and my colleagues – I don’t do secrets.

    Don’t suffer in silence – if your team, family or colleagues are aware of thing they are much more willing to accommodate you having to take time out, even if it makes it tough for them. Remember that they have witnessed your commitment and work ethic already in-spite of your challenges, they know your worth.

    If consulting has taught me one thing, it is managing expectations is fundamental – shout early and loud if you are having bad day, week or month. That way you have time to re-prioritise, refocus, de-scope or re-arrange your commitments – you will earn a lot of respect if you do.

    Be gentle with your self, your family and your colleagues and remember you are human just like they are (and if you work out how to do this, please show me how). Some people have never experienced chronic illness so have no frame of reference to understand or support you – if anything, the are the lucky ones. My CF is now a part of me like my accent and my grey(ing) hair.

    The older I get the more I really appreciate just how remarkable my Dad’s reply was. I try to press on regardless every day and sometimes it can feel impossible and other days it is manageable and I can function just fine. This is my life and I consider myself incredibly fortunate.

  • Daniel

    I agree. The article was really great and I think some of the quotes made me re-think my perspectives of living with mental illness, but I would have liked to have seen more focus on living with mental illness as well as physical illness.

  • Carole Staveley

    I tore a muscle after slipping on a wet tennis court in 1996, which propelled me into 13 years of debilitation due to chronic myofascial pain syndrome. I was able to continue working thanks to the flexibility shown by my employer around work schedules and working from home. The key to getting out of the “dark days” of those 13 years was understanding how much power I actually have in managing this chronic condition and minimizing its impact on my life. Beginning in 2009, I uncovered a number of approaches that have improved my overall condition and reduced my symptoms, including optimal nutrition for soft tissue function, yoga, strength training, and proper hydration – among many other approaches. Yes, it’s a lot of effort to find time and energy to implement everything, but the payoff is huge. I was able to complete my first IRONMAN triathlon in 2013! That was the payoff for me. What can you identify as your purpose for persevering and implementing the approaches that will allow you to live life to the fullest?

  • julainetheartist

    last may, i had to have open heart surgery. in the past with other health issues, i was able to work on my art as part of the healing process. this time around, i am still waiting for my “creative mojo” to return. a well-meaning friend said maybe it was time to give up the artwork, and do something else. if i did that, i would lose a lot of hope. not ready to give up yet…

    • Marna

      DO NOT give up your art! Ever!! Even if you don’t make a dime off of it, the healing benefits of art are just too great. Best wishes on your recovery. Just keep going one day at a time.

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