Fear is a common theme in the Yolŋu experience of renal disease and treatment.
For one patient it was fear that prevented her going to the doctor to
find out why she was sick until she reached end-stage:
..I was feeling really bad as I have described but
I didn't want to talk to the doctor about it.. I felt general malaise
right through my body and I didn't want to go to school to work and I
didn't want to walk very far, certainly not long distances.. I was worried
but I wasn't thinking that I had this kidney problem; I thought I had
something wrong in my back or up in my chest but I didn't know it was
kidney...I didn't know what was wrong and I was frightened of the doctor (interview with Galikali)
She explains how this problem of avoiding or rejecting treatment could
be addressed:
Yes, it's good if I can tell them about my own story and what happened
to me and how I went on to start getting dialysis...and so those Yolŋu
sitting there all look at me and some are actually frightened - they think
dialysis might be anything at all, they might get it and die; and so when
I tell them their heart and their emotions settle down and they're not
frightened
During one of the interviews a group of women including Galikali recounted
a story about another patient's experience:
..Gayilŋa was very frightened so (a group of women) came in to talk to
her at the hospital.. telling Gayilŋa that they were there to help and
that her kidneys were dead - both of them - and she said she didn't want
the fistula so they asked her if she wanted to die and she said 'yes,
it doesn't matter' and (her sister) was upset; G told Gayilŋa that if
she refused to do it she wouldn't look after her but would go back to
(her community)..we (the four women) kept trying to help and other also
came to help...Geluŋ asked Gayilŋa if she wanted to get better and she
sat quietly.. then she said 'we'll all go and you can all have the operation
first' (lot of laughing and joking); next day (some people) came to talk
to her and prayed and then she said she would have the operation - then
she changed her mind..
The patient's sister explained that Gayilŋa finally agreed to the fistula only because she ran out of cigarettes and no-one would give her any until she had the operation.
During this study the Yolŋu researcher was often involved in supporting
other patients, often her close family members. Some come to Darwin for
a fistula, others arrive already very sick and needing immediate dialysis,
and some continue to struggle even after long-term treatment. It is a
distressing and demanding role whose incidence is increasing with the
rapidly rising number of Yolŋu with end-stage renal disease. The experience
of such patients and their families is vividly described by one of the
physicians:
They want to go home. In the context of end stage, it's dislocation, no
family, no support .. fear, terror, get on (the machine) and people die
- never go home - they've been given a death sentence.. if you're in the
community - these people get renal disease, they go to Darwin, you might
see them once or twice and then they die and they go home to be buried
- you just die on the instalment plan, which is what renal medicine is
all about..