Amongst all these seemingly disturbing particulars about dialysis treatment there is one overarching fact that I find more disturbing than any of the above mentioned specifics. That is the complete lack of focus on the psychological aspects of the treatment. It is astounding to me that there is no attempt to look at the psychological aspects of dialysis as a life-long condition that is bound to alter the patient’s life drastically.
There is no sign of emotional support or understanding in the ward to all the humanistic aspects of having a life threatening chronic illness that is more disabling than anything I have tried before – and I will humbly point out that I do know a few things about disability.
On top of that there is a substantial lack of patient networks, be it across units, hospitals or countries. On top of that patients are not encouraged to seek those sorts of networks or information where they would be able to learn about their condition from either peers or professionals outside their particular ward.¨
This leads to making one feel like a patient. There are no attempts to normalize the dialysis experience. It is all about getting the patient hooked up to the machine then leave them alone and turn off the light until they are ready to get off the machine. I am not blaming this on staff only but they are responsible for letting this happen by not offering alternatives to that sort of passive and indifferent treatment.
So the fact that one has to sit by a piece of machinery for that many hours of one’s life makes one way more disabled than necessary.