Posted: Mon 15th Apr 2019
Call me disabled because I have type one diabetes and you'll get a response that's frostier than a polar bear's toenail. Yes, diabetes was a death sentence until insulin was first used to treat the condition in 1921, but today I can live a life as full and long as anyone else.
Yet under UK employment law, me and the 320,000 or so people living with type one diabetes in the UK - including Theresa May, England rugby international Henry Slade and Olympic rower Sir Chris Redgrave - are deemed disabled, because the condition has a 'substantial and long-term negative effect' on the day to day lives of anyone who has it.
That doesn't mean diabetes automatically entitles us to priority parking in the office car park, of course. But it does place an onus on employers to make 'reasonable adjustments' to the workplace to ensure I'm safe at work and can carry out my job. See more on employers' responsibilities to staff with diabetes here.
Diabetes: Walking the tightrope
I've had diabetes for 28 years and was diagnosed aged 13. Type one occurs when the immune system attacks cells in the pancreas that produce insulin, a hormone that promotes the conversion of glucose in the blood into energy. Unlike type two diabetes, it is not preventable and there is no cure. It means a lifetime of insulin injections and blood tests.
Diabetes affects every decision I make. I have to balance the carbohydrates in my food with the amount of insulin I take. Too much insulin and my blood sugar level crashes, causing the unpleasant and dangerous condition known as hypoglycaemia; not enough and it spikes, causing equally unpleasant and dangerous hyperglycaemia. It's like walking a tightrope.
Trouble is, the tightrope is always being shaken by the other choices I make through the day and factors beyond my control. A deadline or stressful work meeting can cause my blood sugar to rise thanks to the release of stress hormones such as adrenalin (as can illness, intense exercise and time of day). Heat, cold, a lie in or a late night/lunch can cause it to fall.
Diabetes at work
Most employers I've had have been reasonable (as required by law). But not all. Once, while working for a marquee hire firm one summer break from university, I was accused of skiving and had the apple I'd been eating hurled at me by my boss. I needed that apple to keep my blood sugar level stable. I later went hyperglycaemic and was accused of skiving again.
I knew then this wasn't fair but didn't report it. I needed that job. I now know these actions would qualify as harassment and victimisation under the Equality Act 2010, the same law that required my boss to make reasonable adjustments for me. Still, it ended well. I later learned that he had been dismissed for bullying after complaints from other staff.
Unsurprisingly, I soon decided a career in marquee hire was not for me and became a journalist. I've worked for a range of newspapers, magazines and websites over the past 15 years or so and all of my employers have made the adjustments needed to keep me safe and allow me to manage diabetes to the best of my ability.
What 'reasonable' means to me
Injections, finger prick tests, continuous glucose monitors and insulin pumps have nothing on a working pancreas. Without one, proper blood sugar control all the time is impossible. Hotel staff once had to access my room after I passed out on a press trip. I've twice had paramedics called to work. I once had to stop a job interview because I needed glucose.
I got that job and spent eight happy years working for that magazine. My boss was discreet and accommodating: I never felt my condition was a problem or made to feel like 'Rob, the diabetic bloke', the office manager always had something sugary to hand, just in case (I needed it only once) and I was given time off for frequent doctors' appointments, no fuss.
I was even given four extra days' paid leave so I could attend an NHS course to qualify me for consideration for an insulin pump and a device called a flash monitor. Some may say this goes beyond a 'reasonable adjustment' but I'd beg to differ: these devices allowed me to cope with diabetes and the stress and long hours of the job more safely and effectively.
Thankfully, my employer thought so too. They supported me and invested in my wellbeing. As a result, I was healthier, happier at work and more productive (though you might have to check that last one with the boss). Nevertheless, technology is not a cure for type one and it can even exacerbate the psychological toll the condition takes.
Diabetes and mental health
An insulin pump mimics a pancreas by drip-feeding insulin via a cannula under the skin, but it can't pre-empt factors such as stress, heat, illness, etc that affect blood sugar and insulin sensitivity. It's hard to come to terms with the fact that even the most advanced treatments cannot take the guess work out of managing diabetes. Every type one wants to be cured.
Flash monitors give a real time feed of how much glucose is in your intertissual fluid, giving tighter control. But the peaks and troughs my monitor revealed were at first a huge shock. Each high represents potential organ damage; each low means impaired cognition and the risk of a fit. It felt like I was being constantly poked in the ribs and reminded that I'm broken.
In 2017, an Australian study found that the risk of suicide among diabetics of both types was seven times higher than the general population. Another found the risk of major depressive disorders is twice as high in type ones. Diabetes UK reports that three in five diabetics suffer mental health problems. Just three in 10 say they feel in control of the condition.
Diabetes is overwhelming. Many people just ignore it, as I did in my young years, not wanting it to restrict what they do or define who they are (I think this is one reason I never spoke out about the actions of my boss at the marquee firm). But ultimately, ignoring diabetes will take a massive toll on your mental and physical health.
You never get a day off from type one diabetes. But I'm lucky that my former employer gave me four days off to help me learn how to better cope with the condition. Now that I have the knowledge, my pump and a flash monitor, my control is better than it's ever been before. And I'm happier than ever before. I wish all employers could be like that.
Five of the worse things to say to a type one diabetic
"Are you sure you can eat that?"
Yes, I am. Type one diabetics can eat what they like, so long as they take enough insulin at the right time to account for sugar content and the rate at which food is digested. Of course, that is often easier said than done!
"Where's your insulin just in case you pass out and I need to give you a jab?"
Touch my insulin and I won't be responsible for my actions. If I pass out, chances are I need sugar, so give me a glucose gel or something sugary to drink. If I can't be roused, call an ambulance. If my breath smells fruity or like pear drops and I am unconscious, I may have a condition called ketoacidosis. This is serious. Call an ambulance.
"You're diabetic? Does that mean you have to eat lots of sweets?"
No, you dimwit. It means my body is unable to produce insulin, the hormone that allows glucose in the blood to be converted into energy. So, I have to inject insulin instead. Trouble is, it's difficult to work out how much insulin I need. If I take too much, I need to counteract the insulin with something sugary. So, hands off.
"Uggh! How can you inject yourself?"
Duh. Because if I didn't my blood would fill up with sugar and substances known as ketones. Then it would turn acidic, my organs would fail and I would slip into a coma and die a horrible death. I think if you had a choice between this or jabbing yourself with a tiny needle a few times a day, you'd do the same.
"But you're not fat!"
Oh, go away. Before that though, understand this: you're thinking of type two diabetes, but despite what you read in the Daily Mail it doesn't only affect the fat and lazy; age, genetics, economic status and many other factors are at play. I have type one diabetes. It can affect anyone at any time and there is no cure. Now off with you.