Di Rundle, a retired community care worker from Bristol, began experiencing extreme fatigue in her 20s but it was not until she was 36 that she was diagnosed with primary biliary cholangitis (PBC), which at the time was called primary biliary cirrhosis. The mother of four was tested for diabetes at the age of 25 years but when the test came back negative, she was told that she was simply “a stressed-out, over-anxious mother”.

At the age of 33, having suffered years of chronic fatigue, she was erroneously diagnosed with lupus. Three years later, when her skin began itching and turned yellow she finally received a diagnosis of PBC. Di, who is now 57, went on to develop autoimmune hepatitis and Reynaud’s disease but says that her condition is currently stable.

Due to having the word ‘cirrhosis’ in her condition, Di has had difficulty obtaining life and travel insurance and has encountered social stigma.

“I have lost count of the times people have assumed that I either am, or have been, an alcoholic, which can be very distressing. People may shun you socially. They either think you can’t handle alcohol or that you must be unable to drink alcohol, neither of which is true,” she says.