Laying your pump out on the table – by Amy Black
Any time I meet someone new I kind of like to address the awkwardness of my diabetes straight away.
Here are just a few examples of actual interactions I’ve had with people over the years… yes, really.
Scenario One – Amy meets a new person at a party
Me – “Hello”
Person A: “Hi. What the f*** is that? “ *points to item-in-question in front of a crowd of people.*
Me: “Oh, that’s my insulin pump. I have diabetes.”
Person A: “No you don’t.”
Me: “ Yeah I do. Look, that’s my pump!”
Person A: “Nah, you don’t. What actually is it?”
Me: “It’s actually an insulin pump.”
Person A: “Wise up, I’m not falling for it.”
Me: “Erm, okkk… but it is a pump.”
My boyfriend Brian then steps in: “Bud, she really does have diabetes… that thing is wired to her.”
Then like some sort of performing monkey I pull out my pump from the back of my trousers and lift up my top just to show the infusion site. I then yell to everyone in a kind of “I am Spartacus” fashion “SEE?! I AM DIABETIC!”
That seemed to do it.
Scenario Two – A friend is told for the first time Amy has diabetes
Friend B: “Amy be careful tonight.”
Me: “Yea I know, not going to get drunk.”
Friend C: “Why?!”
Me: “Because last time I had a fit, so…”
Friend C: “What the hell? How?”
Me: “Because of my diabetes.”
Friend C – “You have diabetes?!”
Friend C – “NO YOU DON’T!”
Me: “I do, honestly!”
Friend C: “Aye, sure.”
Me: “No honestly I do!”
Friend C: “So you’re meaning to tell me you had a fit like this *imitates having a seizure*.”
Me: “Eh, well, kinda yeah?”
You could sense my other friend feeling really awkward as she did a major face palm and screwed up her face in horror.
Friend B: “[Name of Friend C] OK, stop it. Amy really does have diabetes. She’s had it for years.”
The serious looks on our faces and the fact that we’re not laughing finally registers with Friend C. The seizure-mimicking then abruptly stops and we deliberately move on to talk about something else. Anything else.
Scenario Three – Amy eats some jelly babies in work to fix a hypo
After searching the entire PR company, one of the directors passes my desk where he suddenly hears the rustle of a jelly baby bag. He then turns round and notices me stuffing my face with the last remaining victims.
Director A: “UH OH! Someone has hijacked the sweeties and isn’t sharing them with anybody”.
The whole room of about twenty people turn around to hear the commotion. My immediate colleagues realise the reality of the situation and exchange glances with each other to further validate the OMG moment.
*Amy looks blankly back at the director*
Director A: “Come on now, pass them around Amy.”
Me: “…I can’t…”
Director A: “Nonsense, let us have a few.”
Me: “I can’t. I’m diabetic…”
His eyes widen. The penny seems to have dropped.
Me: “…and I need these because I have low blood sugar…”
Director A: “Oh.”
Me: “I mean… I can give you one if you really want?”
Director A: “Oh no, no, it’s OK, don’t worry about it. You keep them.”
I’ve never seen him walk so briskly back to his office. Aaand then close the door.
Ever since my diagnosis it has always been hard explaining to people about my diabetes. To them I don’t “look or act diabetic” so that’s why there’s usually a pantomime-like rendition of “oh no she isn’t” and a “Oh yes I am!” between us.
It wasn’t as bad when I was on the injections. Sure I got the odd look when I pulled up my top or skirt to inject but it genuinely didn’t bother me, in most cases the people were just being curious.
I don’t mind people being curious and I actually quite like it when they ask questions! It is after all the only way to learn.
It’s OK to ask me what the thing wired to my stomach is, and whether or not I was born with diabetes, and exactly what a hypo is and how it differs to hypers, and what the hell is the whole jelly baby thing about anyway. I’ll happily part with the information.
What’s really not OK is for someone to assume that they know everything there is to know about diabetes and forcing their beliefs onto those who are living with the condition every day. Just because I’m young and look healthy on the outside doesn’t mean that diabetes isn’t impacting how I feel on the inside – and just because I have a sweet tooth doesn’t meant that’s how I got the condition in the first place either. The truth is I don’t know how I got it; nobody does, and that’s the whole bloody problem.
I don’t want to walk around feeling like I have a label stuck on my forehead saying “Caution: Diabetes Walking” where people either feel like they need to treat me differently or just avoid the subject completely. The trick is just being mindful of the condition.
Five years ago I was working in a PR firm, where I had a tendency to eat coco pops in the morning. Nutritious? No. Healthy? No. Off-limits to people with diabetes? No.
Boss: “You can’t eat those.”
Me: “I can, it’s just not healthy like but I’ve given my insulin for it so…”
Boss: “You can’t have sugar.”
Me: “Well they don’t advise it but… I can.”
Boss: “If you are diabetic you can’t have sugar.”
Me: “I can if I’m giving the right insulin for it.”
Boss: “I knew someone who was diabetic. They ate loads of sugary things and died.”
I can’t remember what the remainder of the conversation was after that, but that’s probably because I purposefully chose to mentally switch off and carry on eating the bowl of chocolate cereal. I didn’t die that day, but on the following one my boss brought in a brownie and planted it on my desk, either as a peace offering… or she was trying to kill me…
I don’t blame anyone for thinking that people with diabetes shouldn’t eat sweets. Diet undoubtedly plays a huge part in how we manage the condition, but thanks to advancements in insulin therapy our diets are pretty much as flexible and varied as anyone else. This, however, is not what is necessarily being projected by the media, which often blurs the lines between Type 1 and Type 2 diabetes. So if that’s the case, why don’t we raise our voices a little and tell them ourselves?
While diabetes can be challenging, it doesn’t have to be limiting, which is what I wish more people knew. In fact, it can present the strangest of opportunities.
I used to hide the fact that I had diabetes when I filled in job application forms – god I hated that little annoying box that said “please tick if you have a disability”, but last year that all changed.
I was interviewed for a communications post with a mental health charity where I started to talk about my previous experience working for Diabetes UK. After about 30 minutes of talking, one thing led to another and I impulsively announced, “Oh by the way, I have diabetes and here’s my pump.” I placed it in front of the interviewers while smiling rather bizarrely and demonstrating how it worked. I guess you can say it brought a whole new meaning to the phrase “laying your cards out on the table”.
It was because of that little pump, and my diabetes, that I was able to discuss and understand how people with chronic conditions are more susceptible to mental illness. I was able to tell my interviewers about the Diabetes UK psychology conferences I attended to learn more about the link between depression and diabetes and once more, I was able to discuss how physical and mental illness aren’t entirely independent of each other – often they go hand in hand.
I told them about diabetes burnout and diabulimia (which I read about just a week before in Balance magazine) and how frustrating it can be to try and raise awareness of an illness that is so largely misunderstood and stigmatised.
I left the interview that day feeling pretty good. Less than 24 hours later, I got the job.
For Diabetes Week this year, we are aiming to Set the Record Straight. Find out more about how you can get involved in Diabetes Week 2016.