“Diabetic’s aren’t allowed to say ‘sugar'”

I’m writing about this disease I have not for sympathy or because I want the attention and extra views, but because for the majority, my illness is rather misunderstood.

This post comes from a place of confusion, and yes, downright self-pity. I was recently at A & E because I had a UTI (water infection thing) last week and then I experienced the most unusual and uncomfortable pain in my back; 600mg of ibuprofen being the only thing to sooth the pain. I had a feeling that my water infection had developed from a lower UTI, which is the most common type, to an “upper UTI” which is basically where the bacteria spreads to your kidneys, and if left unchecked can cause kidney damage and failure.

Scary. I was right anyway, and they caught the upper symptoms early and now I’m on crazy antibiotics that I can’t take at the same time as having a cup of tea and horse tranquilizers (600mg of ibuprofen, I’d actually run out so when the doctor gave me more I was like “IT’S LIKE FINDING GOLD!”)

A UTI isn’t that rare and most women will have one in their lifetime, but that’s not what my post is about. People who contract a UTI are more at risk for it to transgress into what I have, the kidney-spasmy one which feels like someone is stabbing you with a pitch fork and laughing as you try to deftly get your boyfriend to massage out the pain like some old dear with arthritis and a bad hip, are people who are also like me, people who have diabetes.

When my boyfriend tells people I have diabetes, he sometimes says “she’s type 1 – not the fat one” and I am more likely these days to follow suit. Diabetes affects about 1.3 million people in the UK, and only 10% of these are diabetic: type 1. Because I have been diabetic since I was 8, I’ve always been aware that the disease exists so it’s sometimes surprising to me when people make the wrong assumption about the illness. When I was a kid, my classmates didn’t understand, naturally, so every time they saw me eating, they told the teacher because most of them assumed I wasn’t allowed to eat. Some thought I was allergic to sugar and others thought I had eaten myself into a volcano of sugar-mountain lushness so that sucrose bled out of my eyes and I pissed out chocolate water and Haribo bears.

I ignored all of this, because it’s kids and I actually wasn’t sure myself why I suddenly got diabetes. But as I’m a proper adult now, I notice adults sometimes have this mentality that they know what diabetes is because their grandparent/parent/aunt/friend’s dad has type 2 diabetes. I’ve even known people with type 2 who have tried to tell me what I can and cannot eat and how to live my life because that’s what they know about their illness, but type 2 and type 1 are so far from each other the only thing they have in common is insufficient insulin production.

Being type 1 does not mean you got it because you’re fat, or you have a bad diet, it is normally hereditary, but in my case it was probably passed down to me through my simply being born, because my mother probably had gestational diabetes (temporary diabetes throughout pregnancy and labour) but actually, she never found out if she did have it so that’s just a guess.

No-one else in my family has diabetes, so everything I’ve learned I’ve learned from some statistics on a website or those same statistics through the mouth of a “professional” i.e. a person who studies diabetes and diabetic people, but has never had any first-hand experience of it themselves.

When I tell people – friends, employers etc – that I have diabetes, they sort of go “oh, okay” but almost always have that glazed look in their eyes, kind of like talking to someone about advanced physics and they want to seem knowledgeable and interested but actually they’re thinking “what the fuck are you going on about?”

I’d rather people tell me they had no idea what it is, or what it meant for me. I’d rather them say that than try to guess what diabetes is and then make some snap judgement when I tell them I need to eat immediately because I’ll have a hypo if not. They also don’t understand what it is like to have low blood sugar, or how it affects me hours after or what it feels like to have too much glucose in your blood and how that affects you.

I don’t mean for this to sound like a rant, although it probably comes across that way, it’s just I see this ignorance everyday and I am in three groups now which are severely mis-judged – diabetes, left-handedness and mental illness. I’m in the 10% and 12% of the population first two, so it looks like I’m a person in favour of being in the uncommon groups.

People just assume diabetes means you can’t eat sugar, and that you sometimes “feel funny” if you don’t eat three square meals a day. It’s both and none of these things. I still eat sugar, chocolate and all that other stuff because my regime allows me to, I probably eat more chocolate than I should, but I would say that even if I weren’t diabetic. To be honest, it took me a long time to realise what having constant high blood glucose levels in your body can do to you, and to be honest I don’t really like to think about it too much because I end up thinking I have no control over this; that no matter what I’m in the losing team every time.

I won’t list all the complications of diabetes on here, they’re searchable easily enough. But basically everything you can think of that can go wrong in your body, can happen in someone who has diabetes. One thing that affects diabetics are cuts which are slow to heal and numbing of nerve endings, usually affecting the hands and feet. So I’m like the opposite of Wolverine.

I got my UTI because like any woman, we are likely to get them but I got my upper UTI because of being diabetic. It does suck, but what sucks more are the views people have on diabetes.

I’ve come to learn that not knowing is better than misunderstanding, but people (and this includes myself) dislike being unknowledgeable – we need an answer for everything and in turn we also need to give an answer to everything, which is probably where the atrocity of webMD birthed from – I like it when people get it right “oh, so if you start to feel shaky I should get you something sweet to eat, like lucozade tablets” and not “oh, so that’s like where you can’t eat bread? Diet coke is bad for you, right?”

Meh, diet coke probably is bad for you, but it tastes like shit anyway. The funny thing about being diabetic is the abundance of sugary drinks available and the ones which are “diet.” I’ve sometimes gone into a small shop (like a corner shop or post office) and they literally have nothing for me to buy for a drink. The only drink besides water I can have that doesn’t have aspartame in it is sugar-free Ribena. I also sometimes get that look from people when I order a burger and fries in large and a “diet coke” and one person has actually asked me once why I had diet coke and not regular since “all what you’re eating is fat anyway” and someone once berated me for drinking diet coke because “it tastes like shit.” I didn’t explain why I was drinking it, because if I could, I wouldn’t.

The diabetes industry changes quite often, but in my eyes it doesn’t change enough. I know it isn’t as bad as say, MS, cancer, HIV or those other life-threatening diseases, but just because I can control my illness does not make it any less life-threatening or any less of a burden on me. I have it and probably will have it for the rest of my life, but at any one point it might just take hold and do whatever it pleases because diabetes doesn’t have enough research behind it, and people continue to think it is just a “fat-person’s” disease. And to be quite honest, I sometimes begrudge type 2s myself, particularly those who have the disease through poor diet and lifestyle.

I was once a happy 8 year old and then I was an 8 year old who suddenly couldn’t have normal coke, custard creams, sweets, chocolate. Kids would be around me in a group at school and be sharing things like buns and sweets for someone’s birthday then when it got to me they’d take the packet away and go “oh, right, Luna can’t have that” and they’d smirk (probably) and I’d go home and cry “why me?” (definitely). I didn’t choose the gimpy-pancrease life, the gimpy-pancrease life chose me and I sometimes hate it and I sometimes think it’s not so bad. But I’ll never love or like being diabetic, ever. It isn’t always easy to manage, and people who think they know what it is and then they get it wrong when shit goes down annoys the hell out of me and actually makes me feel worse about my condition.

But I’ve learnt it has nothing to do with me. Just like when I walk my dog Ben, who’s blind and people assume he’s old and they stare. Just fucking ask. “Yo, what the shit is up with your dog’s eyes?” is a better thing to do than to whisper it behind your hand to your ignorant children and then they go away thinking black dogs with white ghost eyes exist everywhere and that this behaviour is not normal.

It doesn’t matter to me now what people think because I have the choice over who I tell about my diabetes and who I don’t. Some people think differently of me, like I’m some fragile sugar-hating unhealthy person who’ll fit at the drop of a hat. Others are okay with it, because they probably have a little more tact than others.

Just a little silence and a little understanding can make a person feel differently about themselves, who they are, what they have and how they deal with it.

Diabetes is a weird one, because worse than being around people who know nothing about it is being around other diabetics who worry constantly about the illness. I don’t really care if your blood glucose was 9.9 this morning and you’re worried that this one anomaly will mean you’ll go blind. 9.9 is a good day for me, sugar. Oops, that’s right I forgot, diabetics aren’t allowed to say “sugar.”





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