In my 27 years as a type 1 diabetic, I’ve been asked so many questions. But mostly:
“Does it hurt?”
“How do you stab yourself so many times a day?”
“How do you survive without chocolate?!”
“It’s fine” you repeat, like a diabetic parrot caught on a loop. Desperate for a seed or a square of dairy milk.
But as with most things, people only ask about what they can see. Your colleagues will see you test your blood and take your insulin throughout the day, before catching you staring longingly at the biscuits someone very kindly brought in. Blood, insulin and sugar. That’s it.
We’ve all judged a book by its cover. Assuming the bright colours guarantee only a heart-warming story. And of course it’s reasonable to think that once someone has a diagnosis, all they need to do is get over a little bit of pain. Learn not to eat an entire Easter egg in one sitting anymore. They will be pretty much fine after that! Right?
Diabetes Week runs until Sunday and this year’s theme is “See Diabetes Differently”. For me, this translates as “See Diabetes In Its Entirety”.
And the reality looks like this. We’re more at risk than others of losing our sight. Translation: if you get something in your eye, you wonder if it’s the beginning of the end. On bad days you’re googling guide dogs on your lunch break.
Wake up with pins and needles. Translation: have I got it so wrong, my circulation is starting to fail? Could I get around in wheelchair? You assess all your usual haunts and whether you could continue as normal.
I’m in a meeting and I’m tired. Translation: is my blood sugar too low? I’m too anxious to leave, too anxious to check my blood in front of people. Do I just eat something and risk making the wrong decision? There is only anxiety.
On the worst of days I have sat at my desk gripped by fear and unable to work because I think I’ve taken too much insulin.
Paralysed for hours, the only work completed is the Oscar nominated performance of “normal girl in office” I have to play so everyone thinks I’m fine.
And then there’s all the things I say no to.
To nights out – in case I have to face a restaurant whose menu makes me anxious or I forget how much insulin I’ve taken.
To holidays – will I have a hypo on the plane? Will I be too far from help? To this day I still don’t like staying on any floor other than the ground. If I collapse, who’ll be able to see me? How will my friends and family cope?
To delivering extra leaflets – I have found myself with shaking hands unable to open the car door to start a delivery run because I simply could not face putting myself in danger.
Because that’s how it feels.
Having diabetes comes with a great big helping of risk assessment – because that is what everything becomes. And then a decision has to be made as to whether I have the mental strength to complete it. For a couple of years, the answer was nearly always no.
A diabetes consultant once told me that ¼ of the patients who walk through his clinic doors have diagnosed depression. And there are tens of thousands of people with Type 1 in Scotland.
A couple of weeks ago I was at a fundraiser for JDRF. A Q&A session with a scientist gave everyone in the room hope there could be light at the end of the research tunnel. I hastily scribbled down some notes and eventually asked a very basic question.
If Government could do one thing to help people with diabetes, what would it be?
She said: The technology exists. It changes lives. Invest in it. And goodness me how continuous blood glucose monitoring is changing lives. A patch on your arm and your smart phone is all you need to check your blood sugar levels. No more finger pricking or being forced into making it a show.
But for me, the technology is the cover star of the book. It’s not the whole story.
I’ve been lucky to receive the mental health support which has reduced my panic and anxiety, and made me able to live my life again to its fullest. Or just about.
Diabetes doesn’t have to stop us doing anything. I’ve traveled across the world. Played hockey, climbed mountains, made speeches to packed rooms.
We can even become Prime Minister.
People with diabetes can do anything they want. But we have to give people ALL the tools they need – and deserve.
And sometimes, we need to start with “Are you ok?”. Rather than “Does it hurt?”.