PATIENTS NEED PATIENCE

Susan Sontag opens her luminous essay Illness as Metaphor by observing that “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

For the past two years I have inhabited that other place. It’s not my intention to write at length, or frequently, about my disease – Angela does that so admirably in her site – but there are a few messages I’d like to pass back to those of you who still inhabit the sunnier side.

Chronic illness completely takes over your life. You don’t realise it at first – you expect that, as with previous episodes, your indisposition will pass and you will resume normal existence. My travails started with a persistent and exhausting chest infection which I only discovered, far too late, had been undiagnosed pneumonia. As a result, I spent about four months, on and off, as a hospital inpatient – including two or three weeks in intensive care – and am now a regular outpatient for ongoing observation, and if necessary further treatment, of this condition and also at another hospital for leukaemia, which was diagnosed while I was an in-patient.

The standard of medical care which has been lavished on me by my NHS consultants and their teams is superb and beyond praise. But it is the whole business of being an outpatient which I find increasingly tedious and burdensome. Fortunately, my two hospitals are close to one another, but in a distant part of London. So my visits to them involve lengthy journeys both ways by taxi [subsidised by London government, thank goodness] in addition to the time spent at hospital, which can be anything between two and three or more hours. Today, I had to visit both, and was out of the house for six hours, returning feeling pretty exhausted after having two blood samples taken and being given three injections.

What is irksome above all is the waiting. Patients do indeed have to be patient, and their partners or companions have to be even more patient. We have to arrive at least half an hour before my appointment time in order for me to give a blood sample, after which we wait, in company with many other patient patients and their supporters, for the doctors. They are usually running something like an hour late. That is not their fault and I do not blame them – I would far rather they were doing their job thoroughly and giving each patient adequate time, which they do, than that they were skimping and rushing to keep up with a timetable.

But it’s all pretty wearisome, and I shall have to go on enduring it for the rest of my life, so far as I can see. I hope that none of you ever find yourselves in similar situations.