BED TALKS, PART 1
‘Zone in on your core purpose in life’ – an interview with chronic illness activist Catherine Hale
In this new series, a companion to ‘Dispatches from Bed’, Sam Pearce interviews Sick thought leaders and patient advocates from around the world, starting with Catherine Hale who has pioneered patient-led research, leading to greater understanding of chronic, energy-limiting conditions. Welcome to our BED Talk!
Catherine Hale lives in London, UK, and was the founder of the Chronic Illness Inclusion Project. Her patient-led participatory research on chronic illness and disability inclusion led to the coining of the terms “energy impairment” and “energy-limiting conditions” or ELCs. She currently consults for Astriid, an employment organisation bridging the gap between innovative businesses and people with long-term health conditions – despite spending the majority of her time in Bed.
Choose three words to describe yourself pre-illness.
Shy, adventurous, soul-searching.
When did you become Sick and how?
In 1988, when I was 18. It was like a slow-motion tsunami preceded by repeated viral infections, including glandular fever, progressing into neuromuscular abnormalities.
It came in several waves, affecting first my arms, then legs. At the peak wave I was totally bed-bound with virtual paralysis of core muscles affecting speech, breathing and swallowing.
The flotsam and jetsam of typical ME (myalgic encephalomyelitis) bedfellows followed: gastrointestinal, cognitive, sensory processing difficulties; orthostatic intolerance and cardio symptoms. And the one constant current that sucks you down: post-exertional malaise/symptom exacerbation.
What were you doing before?
I was in my final year of training to be a professional dancer. I would spend six hours a day in a sweaty studio, dancing till I dropped. In retrospect, not an advisable lifestyle for someone who likely already had POTS (postural orthostatic tachycardia syndrome).
How do you cope now?
Like a weed in the cracks in the pavement, I’ve relentlessly tried to keep growing towards the light. I rebuilt my life several times over after each wave of illness or adversity destroyed it. I changed from dance to social science but had to abandon a PhD.
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Then through relationship, marriage, children, divorce, I finally battled the hostile environment of the UK’s social security system for survival as a disabled single parent. All that striving and pulling myself up by the bootstraps has stopped me drowning, but it has taken a toll.
Nowadays, a practice called mindful self-compassion helps me a lot. I’m lucky enough to feel I’ve reached dry land now where I can stop and breathe.
What is your most challenging symptom?
Gosh, how to choose?
It’s a toss-up between soul-zapping insomnia, the deadly grip of cardio symptoms, or the “brain cells fried in a microwave” sensation of brain inflammation.
What is the worst thing about being chronically ill?
The grief of loss is never over. With an uncertain prognosis you don’t confront the loss all in one go, you just keep deferring hope of recovery. Grief comes afresh at each new stage of life that is affected by the illness.
Now I’m grieving the loss of my daughters’ childhoods and the memories I couldn’t make with them because all my tiny energy supply was spent on survival.
What is the best thing?
Because you can’t conform to social expectations or please everybody, you quickly learn not to waste energy trying. Instead, you can zone in on what is your core purpose in life much earlier than most people and work on finding a version of it that is achievable within the limitations of the illness.
What do you mourn most from your previous life?
It used to be the exhilaration of dancing, whether on stage or in a club. But now my wistful memories go further back into childhood and it’s the long walks in nature that I miss the most. Being immersed in a slowly changing landscape without a care for how far the next bench is, or how long your body will hold out before collapse.
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What are you most proud of in your current one?
My daughters, aged 15 and 18. Their courage in working through their own challenges and the amazing, kind human beings they’re becoming.
If a mitigating treatment for ME was discovered tomorrow (like insulin for diabetes), what would you do?
Go on an epic walking and wild camping tour. I’d start with the coastal path around Devon and Cornwall, then perhaps Patagonia or the Great Wall of China!
What words of hard-won wisdom would you like to share with the Well?
Don’t sweat the small stuff.
Three words to describe you now?
I once described myself in conversation with a fellow activist as a “slow, quiet bulldozer”. I don’t make much noise, but I am extremely tenacious in pursuit of my vision – and my vision usually involves disrupting the status quo.
It took Catherine two weekends to complete these interview questions. DM/MC
Sam Pearce has orchestrated music festivals, stand-up comedy shows, community-building carnivals, Africa Clockwise adventures and school climate strikes. Although her body now insists she lives in Bed, she’s still striving to be an intersectional activist for social justice. The five parts of Pearce’s Dispatches from Bed can be read here: It’s time to normalise being Sick in public.