Sitting on the Tube, I was minding my own business when I was asked by a complete stranger whether the piece of medical equipment on my arm was a ‘nicotine patch.’
A rectangular plastic box placed on top of a sticky piece of adhesive, the lady who had – arguably rudely – interrupted my peace was actually asking about my insulin pump.
In the 10 years since I was diagnosed with type 1 diabetes, it’s kept me alive, pumping insulin through a drip feed to regulate my blood sugar.
It’s also connected to a mobile phone-style monitor so I can control it manually whenever I eat, and sends Bluetooth signals to my blood glucose monitor, so if my levels are skyrocketing or even dipping, it’ll automatically alter my insulin to prevent me from having a high blood sugar (hyper) or a low one (hypo). It’s drastically improved my quality of life.
‘No, it’s actually an insulin pump,’ I laughed nervously to the stranger, to which I was met with a comment that her grandma had type 2 diabetes, before she died from complications.
This isn’t the only time I’ve had an outsider pose invasive questions about my medical condition. When I worked as a waitress, I was constantly being subjected to similar probes, and was once asked if my diabetes was caused by ‘eating too much sugar’ as a child.
In my experience, comments like these always worsen in summer, when either my insulin pump or glucose monitor is more likely to be on show, even though I’ve never actively tried to hide the medical equipment I wear on my body during the winter months.
If I’m wearing a short-sleeved shirt or shorts, my invisible disability actively becomes visible, which has often left me open to interrogation from strangers, and I’m not about to boil during a heatwave, covering myself up in the hopes that people will leave me alone.
Before I was prescribed a pump, I was on insulin injections for six months after I was diagnosed, which was even worse for attracting odd looks, many of whom perhaps thought I was taking drugs.
I would never excuse myself to the bathroom to take a shot either, as I never believed – and still don’t – that I should have to conceal the reality of my condition to save other people a second of discomfort. I have no choice but to inject; it saves my life multiple times a day.
Questions aren’t always a bad thing, though: In certain situations, they’re very welcome.
Whenever I see a fellow type 1 diabetic, I always make an effort to say hello and point out my matching pump – and I’m always more than happy to answer questions from people I actually know.
In England, around 270,000 people live with type 1 diabetes, and we account for approximately 8% of all diabetes cases, so it’s safe to say that we’re a relatively rare occurrence.
When I was running a half marathon a couple of years ago, I found myself struggling at the mile 10 point as my blood sugars were persistently dipping low. The moment I needed it most, the glucose monitor carefully placed on my arm caught the attention of a fellow type 1 – who cheered me on and kindly offered me a handful of jelly babies to bring my sugars up.
What is type 1 diabetes?
According to the NHS website, type 1 diabetes ‘causes the level of glucose (sugar) in your blood to become too high. It happens when your body cannot produce a hormone called insulin, which controls blood glucose.’
As a result, those living with type 1 diabetes need to constantly monitor their blood glucose levels either through a manual finger prick test or via a continuous glucose monitor (CGM), which is worn on the arm and tests glucose through the tissue.
They also need to give themselves insulin either by injecting through a needle, or by wearing an insulin pump.
Like the CGM, the insulin pump is connected to the body like a cannula and continuously drip feeds insulin to regulate glucose levels. It’s also necessary to administer insulin before eating by counting the carbohydrates, which are then converted into units using a formula specific to the individual.
In the UK, less than one in 10 people in the UK living with some form of diabetes has type 1 diabetes. Approximately 90% of diabetes diagnoses are of type 2 diabetes.
Crucially, type 1 diabetes is not related to diet and lifestyle choices. As the Diabetes UK website outlines, the exact causes of type 1 diabetes are not known, and there currently isn’t a cure.
To this day, it’s a stand-out example of the kind of solidarity type 1s are able to offer, even when we don’t know one another.
When the world doesn’t understand what it’s like to live with a condition that can be so deeply debilitating, a mere glimpse into the experience of someone who truly understands your experience first-hand is unparalleled.
Here’s the thing, though: I don’t exist to answer invasive questions about the condition that causes me grief, day and night, even if my pump is on display.
My medical condition is none of your business, and it’s not my job to educate you on something that could be searched online in a matter of seconds.
Campaigning against societal stigma against type 1 – which is vastly misunderstood and completely different from other forms of diabetes – might be hugely important to me, but it takes energy, and as someone living with a chronic illness, I have limited reserves of it.
And unsolicited questions when I’m trying to mind my own business simply don’t fit the bill.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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