Tactics For Working With Chronic Illness
What I do when my body reacts to human interaction like it’s the flu.
In 2015, I caught a nasty virus while travelling. The virus is long-gone but it left behind Post Viral Fatigue Syndrome (PVFS). PVFS is a chronic illness (similar to ME/CFS). It’s a bummer, and makes working tricky.
In December 2018, after 10 months off work recovering, I started a new organisation design project with the wonderful People and Culture team at Addaction. During this project, I learned a lot about how to cope with working and having a chronic illness. I hope that writing about it might help others who have chronic illness, and perhaps even healthy folk who struggle with modern work. I wish we designed our organisations to promote good health so that we didn’t have to “cope” with work, but that’s another blog post.
I did have to develop coping strategies, or tactics*, because having PVFS feels like my central nervous system has been shredded. This feeling increases the longer I spend around people I don’t know very well (like my colleagues and clients on freelance projects). I feel it in my mind (racing thoughts) and in my body: intense fatigue, the glands in my throat swell up, my eyes burn, my temples pound, a tenderness creeps over my lower back, my hamstrings ache like I’ve been deadlifting, and my heart beats super quickly. The whole experience feels… “jangly”. Biologically, it’s a false flu, my immune system mistaking people interaction for infection. Which is frustrating because I really do like people, and my whole job as an organisation designer is persuading them to do new things.
To avoid jangliness and make work more sustainable for me, I developed the tactics below.
Combatting perfectionism
Perfectionism is a risk factor for PVFS. The more perfectionist you are, the more you put your mind and body under strain, constantly striving to meet ever more unachievable goals. Combatting perfectionism will probably be a lifelong project (it’s a core personality trait). CBT has really helped me, as has talking more openly about perfectionism and checking in with myself (and critical friends) on whether I’m over-delivering on my projects.
Calming my central nervous system
Collaborative working in an office is rough if you have chronic illness. Dozens of people to interact with, task-switching, interruptions across email, Slack and Hangouts, harsh lighting and noisy chatter. Here’s what I do to switch my nervous system from sympathetic to parasympathetic.
- Morning meditation (I do Vedic meditation — gotta love a chant). I try to do this at home, but I often practice on the bus if I get a seat, with my eyes closed and headphones on. I meditate to the Calm app timed meditation, with the background music set on “rain falling on leaves” (surely nature’s top sound?).
- Going outside every 1–2 hours if I’m working in an office. Daylight and fresh air press the reset button on my brain.
- Eating every 3–4 hours.
- If I’m getting super jangly, I place my right hand on my heart, and do 4–7–8 breathing for a few rounds. Pro tip: if your heart is racing, put your hand on your heart (palm to skin), focus on your breath and your heartbeat will slow down after a minute or so.
- Doing a few restorative yoga poses every evening.
- Snacking on green spaces. As I’m walking around London, if I pass a green square or urban garden, I’ll often stop and spend five minutes chilling out with the trees.
- Living in London, I try to take the bus rather than the tube (the lights and busyness of the tube jam my brain and drain my energy). If I have to take the tube, I avoid morning rush hour.
Setting boundaries
As a freelancer in a well-paid profession, I’m privileged to be able to set firm boundaries. I know a few people who have chronic illness and brilliant, flexible employers, but I suspect it’s rare.
- I scope my projects conservatively and aim to create minimum viable deliverables (there’s no point spending ages on organisation design deliverables anyway — they’ll be out of date within six months).
- I work up to 3 days per week, spread over 5 days, and as much from home as possible.
- I can spend 4–6 hours in an office, but no more.
- I vary the intensity of my work based on how energy-depleting it will be (see spoon theory). If I need to spend an hour presenting a Show and Tell, that might be the only work I do that day.
- I don’t work with assholes.
I continue to recover and hope to be able to increase the amount of work I can do and be more flexible in how I do it. But, for the moment, articulating the tactics above has helped me to stay focused on recovery and turn down tempting but unsuitable projects.
What are your tactics for working with chronic illness (or managing modern work)?
*I prefer “tactics” to “coping strategies”. I don’t want to “cope” with work, I want to thrive at work.
No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.
Do you want to share your own story about chronic illness? Here’s everything you need to know.
Previously on No End In Sight — Low On Mana
