Let’s talk about T1

As someone who for many years would usually go to the bathroom when in public to do my injection, and who hid being diabetic from my boyfriend so well at the beginning that he thought I was joking when he finally found out (!), I’d say I’ve come a long way with my diabetes recently. Diabetes was never something I was particularly fond of as a teenager – it was just something that I had, something that I had to get on with, and something I was very aware that none of my friends had – but lately, that’s all changed. I’m not really sure what’s triggered it – perhaps a number of things – but these days, I couldn’t be prouder of being diabetic (seriously – I talk about it like, a lot – find me anyone who hasn’t heard of the Freestyle Libre and I’ll happily bore them to tears about my new and improved life as a diabetic version of a contactless card reader 🙂 ).

Saying that – If I’m honest, I still don’t find it the easiest thing to whip out my stomach to inject in front of people I’ve just met. Take the training day I had with work last month, for example – in a room full of new faces, as lunch was served, I stood up to take me, my little FlexPen and needle to the bathroom – this way, I’d be able to get on with my injection, no questions asked, and focus on getting back to eating the delicious little chicken skewers that had just been served. But I stopped myself – because why should I have to go to a grubby old bathroom or be embarrassed about having diabetes? The answer is, I shouldn’t, and no one should. So I sat back down and bolused up.

Of course, literally before I’d even put the injection back on the table, the boy opposite me asked ‘What’s that for? How did you know you had diabetes?’ (Eyes of a hawk this fella), and there I was, finding myself telling a table of strangers how I used to pee like a racehorse. But that’s fine (!), and that’s what this ‘refusing to be embarrassed’ thing is all about – being honest and open about T1D, and not being afraid to tell people what it really involves. And that’s why I was so thrilled to hear from the BBC 2 weeks ago.

The weekend before last was a bit surreal if I’m honest. Walking into work to find I had an email from the BBC saying – that out of ALL the huge and wonderful diabetic blogs out there – they had found my teeny little 3-piece number I started a couple of months ago, was pretty shocking – and to know that they wanted to get me involved in an article that was aiming to raise awareness for T1D only made it better (if you haven’t had a butchers yet – you can find the article here).

smaller article
a snippet of the BBC article

It all stemmed from a recent Facebook post by Madeline Milzark, hashtagged #WhatDiabetesReallyLooksLike, in which she gave her insight into T1D, and which went pretty viral pretty quickly. The reporter was keen to know what my experience was with the public and T1D, and whether I agreed that it’s somewhat misrepresented or stigmatised.

Now one of the problems with T1D is that even for us guys who deal with it every day (you’d think would be EXPERTS at this by now, right?) – it’s confusing, follows no rules, and can frankly be a bloody nightmare. So when people ask me how I feel about how T1 is portrayed in the public, I sometimes think, ‘well how the heck can we expect others to have any idea of what we’re dealing with here?’ But at the same time, when the reporter asked me about stigmatism, I couldn’t help but almost laugh. In the last few weeks alone, I’ve ‘enjoyed’ dealing with the following situations – and I’m in no doubt that most other T1’s have gone through similar:

‘Why aren’t you obese?’

This is what my client asked me when he saw me testing my blood sugar and I explained that I had type 1 diabetes. At least he wasn’t asking ‘why are you obese?’ I guess.

‘So when you’re shaking, you need more insulin?’

This is a common one, which is understandable – hypo and hyper are veeeeery similar words, and if the main preconception linked to diabetes is that ‘you had too much sugar’, taking more insulin when you don’t feel well probably seems like a sensible idea. This quickly led onto a conversation about someone else’s Dad’s cousin who (many years ago, mind) ended up – well, not ending up at all – after his friends, not knowing what to do, did give him insulin to treat a hypo. Not ideal.

‘That’s gross’

Probably my least favourite one I’ve had to fake-smile through and try not to get overly frustrated at recently. Referring to ‘having to get my stomach out and inject in front of everyone’ (as this guy so delicately put it), I was told, in front of about 10 other people, that my injections ‘sounded gross’. And yeh, they probably do. And no, I don’t particularly like getting my stomach out for you to screw your face up at either. But I also quite like my eyesight. And my feet and kidneys. So yeh – #sorrynotsorry for this one I’m afraid.

sorry

After laughing about these ridiculous (yet almost normal to me now) comments, one thing I really wanted to stress with the reporter was actually how much of a support social media has been for me. One thing that really helped push me to start taking my T1D more seriously is when I started to stumble across some of the amazing T1 blogs and Instagram accounts out there. Being reminded for the first time in a long time that there are SO many of us dealing with/struggling with/nailing T1D was a huge eye-opener, and is what spurred me to start my own social platforms – and honestly – they have been ace. The support and kind words I’ve received over the last couple of weeks about the BBC article, blog and Insta account have been overwhelming, and really, really touching. Reading stories of other people’s T1 experiences, receiving recommendations on pump therapy and blood sugar management with exercise, and even having close friends saying how interesting it is, or how they had no idea I had to do this and that, has been incredible, and so, SO refreshing!

So seriously – thank you to all of you who have read the article or even as much as glanced at this blog. Hearing that people have enjoyed reading it makes it a hundred times more enjoyable to write, and so after a bit of a whirlwind response, I’m going to keep cracking on with it. Besides – things are always better when people talk about them, and that’s no different for T1D – and I love a good chat.

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15 thoughts on “Let’s talk about T1

  1. Thank you for your posts! 🙂

    I’m a type LADA myself, which is a form of type 1 diagnosed in adulthood with a very slow progress that disguises itself as type 2 in early stages, but leads to insulin dependency eventually. I’m technically obese and people who are familiar with T1D are in constant disbelief that I too have the same condition that many skinny diabetics suffer from. I MUST be a type 2 to them, and it MUST be because I overate and damaged my body by being unhealthy, not something that my body did to me regardless of what I did or didn’t do.It doesn’t matter to them what I eat in a day, how much I exercise, how tight my control on my numbers is. I’m just fat and therefore it’s my fault.

    I’m not bolusing yet, but I will eventually. I don’t expect people to get better about their crappy comments, attitudes and lectures, but reading experiences from people like yourself who have put up with this nonsense for a while helps to prepare myself and be more resilient. It’s my life, my health, my journey, and nobody gets to tell me how to feel and treat my body! I know what I’m doing, I’m getting healthier, my lifestyle is healthy, now my body just has to catch up. 🙂 I don’t know what I would be doing without the positive influences from people like yourself, so thank you too!

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    1. Hey Sanne! That’s really interesting, I’ve heard of LADA before but never fully understood it, so thank you! Unfortunately diabetes is one of those things that isn’t fully understood by LOADS of people, and definitely leads to a lot of nonsense and often just plain wrong comments – I just try my best to laugh them off and not let them bother me! And that’s the most important thing – as long as you’re in control, know what you’re doing and feel heathy, then screw the others!

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      1. Many health care professionals have never heard of it either, which is… startling and scary.

        I initially got really upset and angry when I got weird and nasty comments (and unsolicited dietary advice) but now I just nod, smile, say thank you and flip them the bird in my mind LOL. You’re absolutely right, screw them if they don’t like it! ❤

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      2. Exactly! 😀 haha I love that – flip them the bird! Diabetes is such a self-managed condition that you’ve gotta just do what’s right for you, ask for help when you need it, and crack on – you’ve got this!

        Liked by 1 person

  2. Awesome article Sophie – all so true! It’s amazing how you can go from being so disinterested to literally obsessed! Keep it up, love the blog xxx

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    1. Mad isn’t it! I think because it’s such a hard thing to control 24/7, that I spent many years ‘trying’, but not really trying too hard – amazing what a change in attitude can do! Thank you 😊

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  3. Another great article. Keep them coming. I will say though that I think I’m one of the lucky T1’s in that I didn’t get it till I was 50 so I feel very blessed that I probably had at least 30 years without it ! Cannot imagine what it’s been like for you growing up with it. When I was diagnosed I came out of doctor’s surgery, got in my car, and burst into tears. Then I suddenly thought – hang on here – anybody would think I’d just been told I was about to die. Never looked back from that moment. Keep positive.

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    1. Thank you Maureen! That’s a great attitude to have! To be honest, I was diagnosed so young that I didn’t really ‘get it’ and just got on with it, so I guess it was good in that sense! There’s probably never a ‘good’ time to be diagnosed I guess. Glad to hear you’re coping so well!

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  4. You’re pretty bold about shooting up around strangers! I don’t mind it but I know it might gross someone out. Some things might gross me out too. I try to be discreet, even going to the bathroom to take insulin if I have to. I wonder how many people have noticed when I thought I was being so smart about it, like the guy who started asking you about it.

    I have an interview with Madeline Milzark up on my site: http://www.70-130.com/diabetes/madeline-milzark-interview/ … She does have a great inspiring attitude.

    People often discuss public misconceptions about diabetes, but I never seem to run into it. Maybe it’s because diabetes doesn’t come up in conversation all that much. Plus there are lots of conditions I know nothing about, I can’t get upset if someone doesn’t understand about insulin and blood sugar. Why would they?

    Keep writing these articles, they’re fun to read. You have a good personality in your writing.

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    1. Haha! Don’t get me wrong – I still inject discreetly! I injected into my leg under the table in this case – that’s why I was surprised the guy opposite even picked up on it! I’m just get fed up sometimes of feeling that I have to hide the thing that keeps me alive all because I’m worried about what others think. But I still get embarrassed – I’m pretty sure my face went a nice shade of pink when this guy started asking me about it all, but I felt that it was important to explain it and not just hide away from it all 🙂 And yeh of course – if someone told me they had a needle phobia, I wouldn’t shove it in their face (that would be a bit harsh!).

      I agree about the misconceptions – I’ve never really been one to take any ‘bad’ comments to heart, because exactly – why would anyone else need to understand? You just have to laugh these things off sometimes! And like you said – I’m sure there are plenty of times in my life my naivety has caused me to say things that might annoy others more ‘in the loop’, that’s just how you learn!

      The interview with Madeline’s great – it’s great that her voice has been heard! Top gal 😀

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      1. I always wish I would notice another diabetic trying to discreetly check or inject in public… I’d go ask them about it and watch their face get pink and embarrassed, then whip out my own pen and oh the laugh we’d share. That’s how it plays out in my mind anyway :p

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      2. 😂😂 yes! well if anyone reading this ever stumbles across you injecting at least we now know to try and embarrass the heck out of you first before telling you we’re T1 😂

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