I Am Not Non-Compliant. I Am Tired.

I have been on haemodialysis for four years. Three sessions a week. I have not missed a session in eleven months and before that I missed two, both because my car died.

In my notes, which I have read, because you are allowed to and everyone should, there is a phrase that appears more than once: poorly compliant with fluid restriction.

I want to talk about that phrase, because I do not think the people writing it understand what it is doing.

What fluid restriction is actually like

My allowance is a bit over a litre a day. That is everything — water, tea, the milk on cereal, soup, the ice in a drink, the fruit that is mostly water.

Being thirsty is not like being hungry. Hunger comes in waves and you can be distracted out of it. Thirst just sits there. In summer it sits there all day and then it sits there all night. I have dreamt about drinking water more times than I can count. I have woken up in the dark and stood in my kitchen and had an actual argument with myself about a glass of water, and lost, and then lain awake.

I get it right most days. I do not get it right every day. Over four years, that adds up to a decent number of days where I drank more than I should have, and those are the days that end up in my notes.

Nobody has ever written "managed an almost impossible restriction correctly for eleven days in a row". They write down the twelfth day.

What the word does

Here is the practical problem with "non-compliant". It is not that it hurts my feelings, although it does.

It is that it travels. It gets written once and then every clinician who reads my file meets it before they meet me. I have walked into appointments and been able to tell, within about a minute, that the person across the desk had already decided what kind of patient I was. The tone is slightly slower. Things get explained to me that I have known for four years. There is a particular way people say "and are we managing the fluids?" that tells you the answer is already filed.

And it changes what I say. This is the part I would most want a doctor to understand. Once you know that admitting to a bad week will be recorded as evidence of a character defect, you stop admitting to bad weeks. So they get less accurate information from me now than they did in my first year, and that is a direct consequence of how they wrote down what I told them.

I am more careful with my doctors than I am with my family, and it is not because my doctors are unkind. It is because my family do not keep a permanent record.

What I wish they wrote instead

I am not asking anyone to pretend. If I have drunk too much and my chest is wet and I need more taken off, write that down. It is true and it matters.

The thing I object to is the leap from a number to a person. "Fluid gain 3.2 kg this interval" is a fact. "Poorly compliant" is a verdict about who I am, and it is doing a job that the fact does not need help with.

And if you want to know why the number was 3.2, you could ask. It was August. I was working. The answer is usually extremely boring and occasionally it is something you could help with.

The other thing

The word "tired" has been ruined for people like me, so let me try to be specific.

I dialyse Tuesday, Thursday, Saturday. Tuesday evening I am useless. Wednesday I am a functioning person. Thursday evening I am useless again. I have roughly three days a week where I am fully myself, and I spend most of them doing the things that could not be done on the other four.

I worked full time through the first three years of this. I do not think anybody in my renal unit knew that, because nobody asked, and I did not volunteer it, because there was no point in the appointment where it would have fitted. I would go from a shift to dialysis and then home, and then get up and do it again.

So when somebody looks at a fluid chart and concludes that I am not taking this seriously, I would gently point out that I have organised my entire life around taking this seriously, and that the evidence for my seriousness is not in the chart. It is in the four years of turning up.

What good has looked like

One registrar asked me, at the start of an appointment, "what is the hardest part of this for you?" I said the thirst, and she said, "yes, it is the thing most people find hardest, and the restriction is genuinely very difficult" — and then we moved on and talked about my access.

That is all it was. She did not fix anything. She acknowledged, in one sentence, that the hard thing was hard, and then she treated me like someone who was managing it rather than someone who was failing it.

I have been under that unit for four years and I remember that appointment specifically.

I am on the transplant list. Year two. If it happens I will have a different set of problems and I am told some of them are worse. I would still like the notes to say what I did rather than what I am.

My own story. No staff, units or hospitals are named, and the notes I quote are paraphrased from my own records.