Your Stories

Your Stories

IBD affects the quality of life and well-being of 260,000 people in the UK.

We talked to you to find out how fatigue affects you, and how you manage it on a daily basis.


Managing IBD Fatigue

The Fatigue Rating Scale

What Patients have told us  fatigue feels like:

  • “physical heaviness … just a general lethargy and can’t-be-bothered-ness. It’s like a kind of physical depression … feeling under the weather‘ (Julie, age 47, UC)
  • ‘ just feeling very, very weary, and no inner energy … I’m bone weary is the old way of describing it… An unfamiliar emptiness, a lack of wanting to do things’ (Robert, age 82, Crohn’s)
  • ‘My body feels two tonnes of weight … All my limbs feel very heavy’ (Vicky, age 24, Crohn’s)
  • ‘Overwhelming heaviness … you feel like lead … you just feel like you’re twice the weight you are…you just suddenly feel your arms are like lead and your hair’s heavy’ (Catherine, age 49, UC)
  • “ very similar to like minor flu symptoms really. … this fuzziness … the tiredness is so heavy, it’s not an ordinary tiredness it’s so heavy and fluffy and strange’ (Sue, age 58, Crohn’s)
  • ’Fighting your head to try and get it to work … the brain fog’ (Sophie, age 37, Crohn’s)
  • ‘Head feels very like cotton woolly, very like fuzzy and I feel really, really tired’ (Fiona, age 21, Crohn’s)
  • ‘It’s just like an aura round you where you don’t want to do anything … and your brain is a bit addled’ (Roger, age 64, Crohn’s)
  • ‘Too exhausted to think’ (Ruby, age 50, Crohn’s)
  • ‘The brain fog feeling’ (Harry, age 45, Crohn’s)
  • ‘Being very woolly in my thinking’ (Gary, age 51, Crohn’s)
  • ’The cogs of your brain have all suddenly gone’ (Hugh, age 39, Crohn’s)