‘Zone in on your core purpose in life’ – an interview with chronic illness activist Catherine Hale

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.