Some patients sought treatment when those
around them or they themselves noticed that the
whites of their eyes and their skin were yellow and/
or they were abnormally pale. One patient said:
‘I felt just as if … As if I had a pain in my back and
I had to go to the bathroom and then my face was
all yellow, my eyes and my forehead, but I didn’t
think too much about it at the time as I had been
out in the sun.’ (Patient 1).
Characteristically, the patients sought treatment
the first time they fell ill with serious pain attacks.
The pain was described as terrible, unbearable and
excruciating. Patients felt nauseous, vomited and
broke into a cold sweat. Patients described being
‘beside themselves with pain’ and didn’t know how
to deal with it. One patient stated:
‘There was enormous pressure on my chest. And I
thought that was what was affecting my breathing.
First I thought I’d finish the dishes but I couldn’t.
I didn’t dare lie down as I also felt sick and so I
didn’t want to lie down. So I sat on the toilet just in
case… I thought, what is this?’ (Patient 4).