To be diagnosed with a chronic illness is life-changing in every way, and often one of the greatest concerns facing those in this situation is how to manage work. When it’s either not an option to give up work or you wouldn’t want to, is it possible to design your working life around the new challenges you face, taking in to consideration what your body and mind can cope with? Creative business coach Jo Becker shares her personal story with us of how she has done just that, as well as those of two women who inspired her to keep going…
One of the lesser known benefits of running your own business is that - with creative thinking and the requisite hard work - it can support the management of health issues. The example of others online who generously shared their stories and experiences encouraged me to create a coaching business and ‘portfolio career’, that I hope will be both fulfilling and sustainable as I lose my mobility over the coming years.
I never thought about running my own business until my late twenties. In fact, I used to love working in the corporate world! I would get a buzz out of walking down a central London street, picking up a coffee and taking in the view from my 12th floor office. Lunches at a nearby cafe or in St James’s Park, and regular drinks after work; it was everything I wanted at a certain point in my life. Until it wasn’t.
Perhaps I outgrew the ‘busy-busy-London life’; maybe my perspective shifted as I went through a period of depression following some pretty traumatic years; or it might have been a result of being diagnosed with Muscular Dystrophy*. Whatever the cause, by the time I was 30 I felt like I needed to consider how I wanted my life and work to look over the next thirty years.
Taking stock this way isn’t unusual, but it felt particularly pertinent for me, as my recent diagnosis meant that I knew certain things about my future: within a few years I would become dependent on a walking stick and orthosis, followed by a walking frame, a wheelchair, and eventually carers. As a single and fiercely independent woman, I believed that it was up to me to make the next three decades count. While I couldn’t change my health or prognosis, I was determined to find a way to work with it.
Two things helped with this; firstly, I had recently left the corporate world and set up a business with a friend. Although ultimately it wasn’t the right business for me, and I’d sell my shares to make a fresh start, my eyes had been opened to what I could achieve. I loved the autonomy of working for myself, and understood what it was like to go against the 'norms' (steady office-based job, progressing through the ranks over time) that I had expected to follow.
Secondly, Instagram and the online business world were a massive source of unexpected inspiration. Social media provides a window into other worlds (for better or worse!), and I could see that there were some amazing creative entrepreneurs running thriving businesses online, while living with chronic illnesses. In particular, I admired the attitudes of Sara Tasker and Jen Carrington, who had both built businesses that served themselves, as well as others.
Sara Tasker- a well-known Instagram coach and author - began her Instagram account while on maternity leave. Her beautiful imagery and natural honesty created a community, while her self-proclaimed ‘geekiness’ about the technical side of social media enabled her to grow her account so successfully that she was able to help others through coaching and online courses. This enabled Sara to leave her NHS job, and work from home.
Most importantly, it has allowed her to work from her bed when she needs to, using just her phone. Sara has Dysautonomia, a condition which affects her nervous system and can flare up at anytime. For years she tried to push through, ignoring her symptoms or managing them as best she could while holding down a traditional 9-5 job; being her own boss has allowed Sara to find more of a balance, and take better care of her health.
Meanwhile Jen Carrington, a coach for creative business owners, very consciously set up her business following two mental health breakdowns, as she knew that she’d be happier working for herself. She had also been diagnosed with Chiari Malformation at the age of 16, and as this has become increasingly symptomatic in recent years, she’s more grateful than ever for her business. Jen has created a career in which she feels fulfilled and is able to pace herself carefully, allowing her to manage this rare neurological condition as best she can. She has taught me that a slow and steady approach to growing a business, will lead to something sustainable and rewarding.
Like myself, Sara and Jen have had to learn to live life more slowly. This can be frustrating at times, but you learn focus on enjoying the things that you can do. This has included pursuing work that we love, in a way that suits us and our individual health conditions. Of course creating a business that allows for this takes time and energy upfront and a determination not only to stay in our lanes, but to create them, trying not to worry too much about what others might be doing. It is all part of working with what you have, or as Jen has been known to say: “Playing the hell out of the cards you’ve been dealt”.
Personally, that has included sharing some of my experiences as a newly-disabled and progressively ill woman, who is stubbornly determined to always try. I’ve learned - and I teach - that we get to choose; not necessarily what happens to us, but how we try to deal with it. We can choose to try to live, to travel, to build a business, to do work that we love. Modifications to plans and experiences are often required, and success is not guaranteed, but a huge amount of fulfilment comes from knowing that we’ve done our best, despite external forces working against us. Travelling solo around countries such as India with a walking stick, a backpack, and seriously weakened legs taught me that!
Taking control of my work in order to support a health condition I cannot control, helps me to feel more empowered, and I’m grateful that social media shows me, and helps me to share, that it’s okay to do things our own way. In fact, technology and the modern online landscape arguably enables more people to pursue 'work that works for them’, as it breaks downs physical barriers and levels the playing field to an extent. There’s no escaping the fact that it is also a competitive and busy landscape, and determination is key to achieving success. But by focusing on how we want our lives to look in the future, and the things we want most, it becomes easier to persevere.
*In case you're not familiar with it, Muscular Dystrophy is a group of muscle wasting diseases. I have a super-rare strain of it, called GNE Myopathy. It is progressive and untreatable. Symptoms began in my late twenties: I began falling over as my calf muscles weakened, and and now most of my leg muscles are significantly affected, and my hands are beginning to weaken. In time I am expected to lose the use of my legs and arms. It’s not okay, but also it is okay; it’s my reality, so I just have to make the most of it.