The Diabetes Is Not the Hard Part

I was diagnosed at nine. I am twenty-six. That is seventeen years, which I am told is about forty thousand injections, although I have never counted and I would rather not.

People assume the hard part is the needles. The needles are nothing. I can do a correction dose one-handed on a bus while continuing a conversation.

The hard part is the appointments.

What a bad appointment sounds like

You hand over your data. Somebody reads it in front of you, silently, for a while. Then they look up and the first thing they say is about a number.

"Your HbA1c has gone up."

I know. I have known for three months. I live here. I have thought about that number more than you have and I have thought about it at four in the morning.

Then there is a pause where I am expected to explain myself, and I have learned to fill it with something that sounds like a plan, and then we agree on the plan, and then I leave.

What did not get discussed: that I changed jobs and my shifts rotate; that my last hypo was at work in front of my manager and I have been running myself deliberately high ever since because I would rather be tired than do that again; that I had a run of about three weeks where I was so sick of the whole thing that I did the absolute minimum to stay upright.

All of that is the actual explanation for the number. None of it fits into a conversation that opens with the number.

My HbA1c is not a measure of how hard I am trying. It is a measure of what happened, and what happened has reasons, and the reasons are the only part anyone could help me with.

The word "control"

I would like somebody to retire this word.

"Your diabetes is poorly controlled." I understand it is a technical term. I also understand English, and so does every teenager who has ever been told it, and what it means in English is: you are not in control, you are failing to control something, this is a statement about your competence.

I was fifteen when I first got that sentence properly, from a consultant who was not unkind and who I do not blame. I remember going home and deciding, with total clarity, that if I was going to be told I was failing either way then I might as well stop trying so hard.

That lasted about eight months. I do not recommend it. I am extremely lucky that the only thing it cost me was eight months.

What my parents got wrong, and what they got right

They were terrified. Of course they were. Someone handed them a nine-year-old and a needle.

What they got wrong was the surveillance. Every single thing I ate, for years, was an event. There was a particular sigh. There was a way of asking "have you tested?" that was really asking "do I need to worry", and after a while I started lying, not because I was doing anything wrong but because I wanted one meal that was not a clinical encounter.

What they got right, eventually, was my dad deciding — on his own, I found out later — that he would stop asking about numbers altogether and ask about my day instead. He did that for about ten years. He is the only person in my family who knows anything real about my diabetes, and it is precisely because he stopped asking about it.

The appointment that changed things

I was twenty-two. New consultant. She had my data up on the screen and she turned the screen slightly away from herself, towards me, and said: "Before I look at this properly — how is it going? Not the numbers. The whole thing."

I cried, which was mortifying, and which I had not done in an appointment since I was about eleven.

Then I told her about the hypo in front of my manager, and the running-high, and the three weeks of not caring. And she said something I have quoted to other people with type 1 approximately two hundred times since: "That all sounds completely reasonable. Running high after a hypo at work is not you being bad at this, it is you making a sensible trade-off with bad information. Let us get you better information."

That was the conversation that got me onto a pump and a sensor, which have changed my life in ways I will not bore anyone with. But the pump is not the point. The point is that she asked a question whose honest answer was useful, instead of a question whose honest answer was a confession.

What I would say to a doctor

Do not open with the number. You can get to the number; you will get to it in better shape if you get there second.

Ask what the hardest part is at the moment. Ask what happened around the bad patch rather than why it happened — "why" is an accusation in most people's ears and "what was going on" is not.

And please understand that for those of us diagnosed as children, you are not one doctor having one conversation. You are the eleventh in a series, and we arrive with the accumulated defensive posture of every appointment that came before you, and none of that is your fault, and all of it is in the room with us.

Seventeen years. Four consultants. About four conversations I would call genuinely useful. I remember every one of them, which tells you both how good they were and how rare.

My own story. I have not named any of my doctors or hospitals, and my dad has read this and says he does not mind being in it.