If it can't be measured, does it matter?

Metrics.

What are they, medically speaking?

Usually numbers. For diabetics of all stripes, it's usually blood glucose level numbers, HbA1c, time in range, ketones, the presence of dawn phenomenon, numbers of and severity of hypos, etc.

These are objective and immutable. Your GAD antibody test numbers determine whether or not your body is destroying the your insulin-producing beta cells. Your c-peptide test shows how much insulin (if any) your body is producing.

These are the metrics used to determine eligibility for certain tech available to type 1 diabetics in a lot of places.

What's missing? The squishier things. Mainly quality of life.

And here's why that's probably the most important thing and my confusion as to why it is constantly left out.

Chronic conditions are chronic.

I know, fuck me, right?!

If you've got some nasty but tolerable side effects from a 14 day treatment, you can usually just roll with it because hey, it'll be over in two weeks.

There is no 'over' for us, except for death. (Some would argue those who get dual transplants, usually kidney and pancreas have an 'over' but they're just swapping the pain in the ass of T1D for the pain in the ass of being a transplant recipient.)

Story time!

When I was newly diagnosed, I was told that I would be able to lead a 'normal' life. That's a lie. I can lead a facsimile of a normal life but it requires constant attention. Sometimes it's high level attention, sometimes it's low level attention, but having T1D means that there's a part of your brain that is constantly on T1D duty.

Upon realising that this was my 'new normal', I started looking at what was out there. I found Libre, I found Dexcom, I found a variety of pumps.

Wait. I can have a bit of tech attached to me that lets me be 4-hours-notice spontaneous rather than 24(+)-hours-notice spontaneous? SIGN ME UP.

So I asked my endocrinologist consultant "How do we make this happen?"

'Go to DAFNE,' they said. I went to DAFNE.

"Okay, how do we make this happen?"

'We'll discuss it at your next appointment,' they said. That next appointment that was supposed to be six months on but was pushed to eight months because of consultant illness, holidays, etc.

"Okay, how do we make this happen?"

'Looking over your information, you seem like a good candidate. We'll discuss it at the next pump assessment clinic. They happen every two weeks.'

"Great! Let me know when I need to come in."

Three months later...

'Your A1c is good and we're not seeing any indication of dawn phenomenon [note: their meter reader wasn't working so they had none of my meter data], so... Are you planning on getting pregnant? No. Sorry, we can't recommend the pump for you.'

I went home and cried.

I worked so hard in order to qualify. I put aside the time to do the soonest DAFNE course they had spaces in. I worked hard to reduce my A1c. I worked hard to be a 'good' diabetic.

And I honestly felt like the thing that was my biggest concern - burnout - wasn't being taken seriously. Because it's psychological. Because they've had people who hated the pump (which impacts me because I'm the same as those people?). Because my quality of life with a chronic condition doesn't matter.

I am stuck with this until I die. (And please, no articles on the latest 'cure trials' - it turns into 1984 where 'The cure is ten years away. The cure has always been ten years away.')

I am stuck with a chronic autoimmune condition that affects every aspect of my life until I die.

My relationship with food. With exercise. With my husband. With my family of origin. With sleep. With work...

There is no part of my life that isn't touched by being type 1.

And yet, because there is no easy way to turn it into a number, my quality of life gets little to no consideration.

Because I'm 'well managed'. Because I'm 'compliant'. Because I'm not in a 'crisis situation'.

Why does it have to turn into a situation where I am actively in harm's way in order to be considered for a device that will make my quality of life better?

Just because there is treatment for this chronic condition doesn't make it any less chronic. It doesn't make the psychological strain disappear. Quality of life needs to be seen as important to the consultants as the more easily measured metrics.

When you tell me my quality of life doesn't matter, what I hear is that the only thing you care about is my longevity, not who I am as a person.

[Addendum, 05 Jul 18: I do not fault the consultants entirely. They are going based on the edicts given to them by NICE in the UK and insurance companies elsewhere. Where I fault the consultants is their lack of transparency and the number of times I've been told 'you're a good candidate' and then followed by a no because I haven't met some unknown criteria. The obfuscation on the clinical side makes this chronic condition even more frustrating than the baseline.

I fully understand that the vast majority of Diabetic Health Care Professionals wants the best for their patients and they're hamstrung by various entities. Tell me. I will share your frustration and be more understanding than if I get the runaround.]