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Martin Paul Eve

Professor of Literature, Technology and Publishing at Birkbeck, University of London

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The autoimmune conditions from which I suffer are a total pain to describe under the general frameworks within which most people understand illness.

For most short-term infections – which are, after all, the frame of reference most people hold for illness – rest is helpful. You should go back to bed and you’ll feel better. If you are tired, it is a sign from your body that you should rest.

With the autoimmune conditions from which I suffer – rheumatoid arthritis, vasculitis, and colitis/bowel dysmotility – comes crushing fatigue. And I mean the most terrible fatigue and tiredness I can describe. It surges arbitrarily as my immune system mounts inflammatory responses against my own body.

But here’s the problem: this fatigue doesn’t go away with rest. So I normally push through. And well-meaning people tell me to take it easy, to rest, to stop, to take time off. Sometimes, they are right and a bit of rest is helpful. I agree with them this week. But it isn’t going to fix it. Today, on my sick leave, I slept for 13 hours. I am still as tired as when I started. I could go to bed for the rest of my life and still be tired.

This is why I usually take advantage of flexible working. Being able to work when I can and rest when I need is a better solution for me. (Though it does mean that my working hours are when I feel good and my leisure time is mostly illness.) But this doesn’t fit with much workplace culture. Obviously, lots of work commitments need on-site, face-to-face meetings that become difficult under such conditions.

And it comes and goes arbitrarily. So am I allowed to have fun? Should I post a picture online showing that, one evening, I was able to go to a concert? But what about the fact that I had to cancel a work meeting two days later because I was unwell? How will others react to this? I imagine they think I’m faking it or something. But what about the three concerts that I had booked that I also had to cancel about which there’s no evidence?

How do you describe this kind of illness where one day the GP calls you an ambulance and the crew insist that you need to go to hospital with them, as happened last week, but the next day you feel well enough to work, write, teach, or even go to a concert? It is hard to describe and to make people understand.