As I sit here typing I am ridiculously conflicted. This week has been great for the charity that I run, we've been all over the media. Given that we raised a grand total of £3500 last year we desperately need the exposure and it is encouraging that, finally, we are the go to charity for this issue.
Of course the bad news is that yet again someone had to die for it. Her name was Lisa Day and she was 27 years old. She waited over 4 hours for an ambulance.
The charity I run (www.dwed.org.uk) deals with Eating Disorders in Type 1 Diabetes and I am also studying for a phd in the subject at Birkbeck. Type 1 occurs when the immune system accidentally destroys the insulin producing islet cells of the pancreas leaving the patient reliant on synthetic infusions of the hormone for life. Insulin is a crucial hormone, one of it's main jobs is to ferry the energy from food around your body and into the cells where it is burned for fuel. In the absence of insulin the brain panics and looks for an alternative energy source, essentially the body starts cannibalising itself. It feels as bad as it sounds. The symptoms of undiagnosed Type 1 diabetes come from this process, the cannibalised matter is excreted in the urine so you constantly need the loo, this of course completely dehydrates you so you go through gallons of water and the whole process is utterly exhausting so you're shattered. Ironically though, particularly if you are female, people start telling you how good you look, they ask you what your secret is and despite feeling half dead you start thinking 'hey this is great! I'M LOSING WEIGHT'.
Then you find out that actually you aren't the luckiest girl in the world. You have a life threatening chronic illness and treating it involves endless mental arithmetic about carb to insulin ratios and adjusting for exertion and time of the month and most horrifically of all, that weight goes right back on. It's a strange feeling to know that people admired your body for eating itself.
Type 1 Diabetes is relentless, cruel and unpredictable. It looks like a simple equation, food = insulin. That's what I thought when I was first diagnosed until the weather changed and so did my blood sugar, at most it's good guess work. And the irony is if you do nothing, hit burnout, if you stop caring about all the counting and the weighing and the injecting. You lose weight. Unsurprisingly in some (mostly women) this practice becomes chronic. The omission of insulin for weight loss purposes is known as Diabulimia but this is not a medical term. And the problems begin here.
I think of Lisa and I wonder how typical she was in terms of her diabulimia. I wonder if like others lost she was sat down as a child by a diabetes nurse and told she was obese. I wonder if like a friend of mine she read about another type 1 one who had gone blind through diabulimia but only really took in MASSIVE WEIGHT LOSS. I wonder how many times this week I have said those three words and how much damage I've done. I wonder if I have any right to think any of those things and if this piece will make things worse for Lisa's family. I truly hope not because I didn't know her. I have known her pain though.
The issue is simple and complicated at the same time. The process is easy right? No insulin = weight loss. The complications come when we look at treatment. Do we put these patients under diabetes or eating disorders, do we let them get treated for anorexia (with a focus on relaxing around a food, an impossibility for a type 1) which directly contradicts good diabetes care, do we turn them away because their BMI is too high for a standard eating disorder, do we send them to a specialist unit - oh THERE ARE NONE. We fall through the cracks. There are two units in the Entire of the UK who have a specific diabulimia programme. I dread to think what those waiting lists look like.
It's not fair that I'm here and she's not. I tried to quit the charity last year following a devastating bereavement. Then you hear stories like this. You feel the pain and the anguish of the family and you know the only reason it wasn't yours is dumb luck and so you keep pushing, hoping for days like these when the issue gets national attention. And then the conflict creeps in again because Lisa had to die for it to happen. And round and round we go.
www.dwed.org.uk
jacq@dwed.org.uk