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Table 3 Quality of life: Impact on emotional/mental health

From: Co-designing inflammatory bowel disease (Ibd) services in Scotland: findings from a nationwide survey

Quote no. Quote
Quality of life: Impact on physical health
  1. “The extreme tiredness is very hard to cope with.”(P315)
  2. “Feel tired even when asymptomatic. This affects my working ability and it would be very helpful to receive some sort of financial help like a tax credit or small benefit so I could always work 4 days a week without struggling.”(P412)
  3. “The fatigue that is debilitating and under estimated.” (P61)
  4. “My life has went on hold since diagnosis. Either because of pain or fatigue I have been unable to go on holiday, and worse still, my work has been hugely affected with long absences…”(P169)
Quality of life: Impact on social health
  5. “Can be difficult when out for day and have to join queue for toilet-if use disable one can get dagger looks from other people who are me judging me as they don't realise what it is like as I do not look any different .” (P5)
  6. “I have lost 3 years of an important stage in my life to Crohn's and it has affected my friendships, my family and my education. “(P50)
  7. “Also feel quite fed up about having IBD because of travelling issues and being anxious about needing the toilet and having access to a toilet. The fear never goes away and you are always on the alert for where the nearest toilet is even if you hardly ever have to go urgently. “(P136)
Quality of life: Impact on occupational health
  8. “It's very difficult and I worry a lot about not being able to work and pay my mortgage. Was refused benefit when I was off for around 6 months the last time.” (P41)
  9. “It isn't easy. Struggling more with working as I get older and coping with IBD.” (P102)
  10. “It is a constant struggle to get any welfare when not able to work. I have worked since I was 16 and paid my way but never there when I need it adding to stress levels” (P168)