How to find balance living with chronic illness
Learning to live with constant pain, fatigue, nausea, or other debilitating symptoms, can be really tough – but there are a number of techniques you can use to help meet the challenge
"Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain,” wrote Vivian Greene.
I suffer from a chronic health condition which causes acute fatigue, muscular pains, nausea, and anxiety. For a long time, I ignored my issues, veering between stress and shame about not feeling 100%, and self-pity about being ill.
Sara Tasker is an Instagram expert, author, and creative business coach, who has created a hugely successful career while living with a chronic health condition. Sara suffers from dysautonomia, which presents with a wide range of symptoms – her biggest being fatigue and accompanying brain fog.
She reiterates my feeling of shame around chronic illness, and says: “British society has a tendency to link tiredness with laziness, and I felt like my fatigue was a moral failing, somehow.”
Elma Glasgow, from Felixstowe, runs a consultancy, while also training to be a wellbeing coach. Her myalgic encephalomyelitis (ME) was triggered by a breakdown in 2017. Elma experiences intense fatigue, brain fog, and dizziness every day. For her, travel became a problem. She says: “I was also worried that my legs would give way in front of other people. I would walk closer to walls; when my legs started to go, I had something to hold on to.”
Acceptance is the first step
For me, I stubbornly refused to accept that I would have to accommodate my chronic health conditions in my professional life, or that an ‘always-on’ culture I was part of as a senior academic was not a perfect fit. As a single parent, and an ambitious academic, I was living a high-paced and very demanding life. I wanted to appear reliable and professional, and was worried that discussing or admitting to my health condition would impact negatively on my career.
But, slowly I realised that this was not a sustainable way to exist. Often the first step towards living more mindfully with a chronic illness comes from an acceptance of the illness. I finally went freelance just after my twins were born, five years ago. This has allowed me to be more flexible, and adapt my work to suit my life and my health.
Sara says: “Accepting a chronic illness means accepting you’re never going to get better. That can be tough in a world where somebody is always trying to sell you a new miracle cure. But that acceptance, for me, has been really key; once you know a certain symptom is never going away, you can start the work of figuring out how to live your life, and do your job, around it.”
Elma also had to start by accepting that her illness was a part of her. She tells me: “I had to reframe my illness as a huge learning experience because I couldn’t turn to an expert who could explain what was happening. ME is still a relatively un-researched illness, so there’s limited support available to the public.”
Make small changes
Acceptance means making small changes and accommodations to avoid burnout, and to start recognising triggers. For Sara, it’s the small changes – like getting taxis instead of the tube when she has meetings in London – that have made a big difference to her wellbeing, once she stopped trying to fight the reality of her body. Elma started learning new meditation techniques to understand her body better, and tune-in to it, which has helped her spot the signs of worsening symptoms earlier, and identify (and, therefore, avoid) her triggers.
For me, a huge part of this acceptance has been acknowledging that I might need more help than before. I used to be reluctant to ask for support, but I have learned to articulate to my partner when I might be feeling tired, or when I might need to rest during the day. Elma also found a local ME support group which really helped her, and, she says: “I changed my mindset; I’m now a lot less hard on myself and much more accepting of my body. If I feel unwell, I rest. If I have to cancel plans, I get frustrated but I accept that I’m frustrated.”
Part of acceptance is recognising our limits. It’s much easier to work remotely now, because of technology. But, being freelance can have its downfalls. There are fewer boundaries between home and work, and there’s also a tendency to take too much on at times, because there’s the fear of an inconsistent income stream.
But, prioritising and careful planning to focus on things that bring the most benefit is crucial. Sara says: “For years I tried to push myself to do more in-person workshops and retreats, because my peers were doing them so successfully. But once I accepted that I just couldn’t physically handle them, and made the switch to teaching online from my home, my profitability quadrupled overnight.”
Elma also recommends setting strong boundaries and sticking to them. Because you know your illness the best, it’s up to you to decide what your limits are. “Be utterly realistic and honest with yourself,” she tells me.
Design your own template
Both Elma and Sara propose finding your own way to work, rather than conforming to the template society has imposed upon us. In Sara’s words: “That rulebook was written for a non-disabled, neurotypical 1950s white man with a Stepford wife waiting at home with his slippers. It doesn’t apply here in the real world. You don’t have to work 9–5; you don’t have to sacrifice your humanity to make money; your productivity does not define your worth.”
Elma reminds me that health always comes first, without any compromise. Our tendency is often to just power through, but the repercussions can set us back by a few days if we’re not careful.
I am now an author, speaker, and consultant, and have written three non-fiction books in the past two years, with the next book out in 2022. I run my own consultancy research think-tank, ‘50 Percent Project’, that examines global inequities, and have given talks and workshops for clients such as the United Nations, the NHS, and the Environment Agency.
People often ask me how I do it, with five-year-old twins. And, I always say that I have focused on my skills and my experience, slowly chased away guilt and shame out of my life, and learned to ask for help.
I have created a life and career I am proud of, in a way that suits me, my health, and my family, and not worrying about how I am perceived by the world. I do believe that work-life balance is a myth, and it’s better to be flexible, and prioritise according to what suits your health and lifestyle.
There is no ‘one-size-fits-all’ template to living and working with a chronic health condition. We must find what works for us.
Dr Pragya Agarwal is a behavioural and data scientist, author, speaker, and consultant. Visit her website drpragyaagarwal.co.uk
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