Intended for healthcare professionals

Practice A Patient’s Journey

Fatigue in primary biliary cirrhosis

BMJ 2012; 345 doi: https://doi.org/10.1136/bmj.e7004 (Published 22 October 2012) Cite this as: BMJ 2012;345:e7004
  1. Matilda Hale, patient1,
  2. Julia L Newton, professor of ageing and medicine2,
  3. David E J Jones, professor of liver immunology2
  1. 1Cramlington, Northumberland, UK
  2. 2Newcastle University and Newcastle Hospitals NHS Foundation Trust, Freeman Hospital, Newcastle upon Tyne NE7 7DN, UK
  1. Correspondence to: J L Newton Julia.Newton{at}newcastle.ac.uk
  • Accepted 4 July 2012

This patient developed severe fatigue as a result of primary biliary cirrhosis in her 40s. She describes her frustration with the reluctance of successive clinicians to recognise the severity of her fatigue and the damage it was doing

I was diagnosed with the liver disease primary biliary cirrhosis (PBC) in January 1986, at 42 years old. Unusually, my general practitioner recognised it and immediately referred me to the Freeman Hospital in Newcastle. Many people take years to get a diagnosis, as doctors often do not recognise the symptoms or attribute them to other illnesses such as depression. At the hospital I was told that there was no treatment for my disease but that they would look after me. I was told that it affected about nine women for every one man, and there were more known cases in northeast England than anywhere else in the world. However, I knew no one else with this disease, I had never heard of it nor had any of my friends, and so it was a very lonely time.

By the time I was diagnosed, I knew I was different from my friends. I was always more tired than they were; less able to cope with a day out; ached all over, especially in my legs and arms; and could not lift heavy pans easily. I was used to being an active person: I played squash and badminton, did a lot of walking and gardening, did my own decorating, and had a good social life. As a single parent with two teenage children, this was a difficult time for me. I did not tell my children about my illness and tried to hide it from them. I used to take them to school then go home and sleep for several hours each day, setting …

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