Out Of Order

You might remember two of my earlier blog posts if you're a regular reader; Hobnobs in Hiding part 1 and part 2 are two of my more popular posts. If you've never read those or you'd just like a refresher then:

Hobnobs in Hiding Pt.1 is here

Hobnobs in Hiding Pt.2 is here

Those posts contain detail of my early diabetic life through school, my struggles to come to terms with my diabetes and the extraordinary lengths which I went to, to hide my condition.

Why am I revisiting those posts? Well, back to the present day, you may have noticed some controversy on Twitter surrounding a very tiny newspaper piece which was sent in by an anonymous reader. Liana tweeted a photo of the offending article but if you haven't seen it, it looks like this:

Alongside many others, I expressed my displeasure at using column inches for such a stigma breeding opinion. The Metro published replies to that opinion and that is perhaps some saving grace for them. However, should it have been given the time of day in the first instance? We can't assume readers pick up and read The Metro on consecutive days to hear both sides of the "argument" - Three responded to the offending comment.

Not that there is an argument to be had or any kind of debate, really. I strongly believe that anybody should be allowed to treat their illness in a public place when necessary but, as a Type 1 Diabetic, I am only going to write about Type 1 Diabetes in this post and the incredible dangers of causing people like me to hide their diabetes.

It is only relatively recently that I gained the confidence to talk openly about my diabetes and even more recently that I have gained the confidence to do diabetes "stuff" in public. Many have simply bitten the bullet and never hidden their diabetes, public injecting and blood glucose checking has never caused them any anxiety and they just crack on with things. Others have always had a problem in that regard and, to this day, should I need to inject in public rather than use an insulin pump I would have anxieties over the process, being watched and being judged. Reading through the Twitter threads following the Metro controversy, it became apparent that some are going through what I did in the 1980s and what I still would be going though over public injecting. 

Bathrooms, toilets, the WC, whatever your preferred term, appear to be the go-to place for many to hide away to do their diabetes necessities. Some even recalled incidents of being told or asked to use the bathroom to check their BG or administer a bolus - Hence the image used for this post. The bathroom might not be out of order but demanding that a diabetic use one to inject absolutely is!

Nobody with diabetes should feel ashamed to have the condition. I doubt that many of the diagnosed woke up one day and decided it would be cool to be a diabetic and actively tried to make it happen. Millions of people have diabetes of various types. It is incredibly common. So, why are we being shamed, stigmatised and made to feel like second class citizens?

The media.

Society still takes on board a lot of media influence. That might be TV, Internet or "newspapers" such as The Metro. Influence isn't as difficult as you might imagine. A few carefully chosen words and images can cause many to act and think in the most horrendous of ways. Sensationalism sells much copy, too. Could that be the reason why The Metro published the thoughts of "Shocked" the anonymous person from Tyne and Wear. With much attention and even reader responses, the following day, I wonder just how real "Shocked" is and just how truthful their little comment actually is. The British press are well known for the somewhat bending of the truth. It sells copy, remember? 

"Shocked" suggested an injection into the hip, too. I've injected in various places but never into the hip, have you? and the lifting of the skirt to the hip? I've never worn a skirt but I can only imagine that hip exposure is easier from pulling the top of a skirt down a few inches. 

Things don't add up with this little opinion piece but that's by the by. It's published and the easily influenced may feel the need to verbalise how shocked they are should they see a diabetic doing what they need to do in a public place. 

A person may then neglect to inject, pump, check their BG, flash a sensor or check their CGM in public from then on. Purposefully neglecting their T1D management, conditioning themselves to hiding it and potentially causing complications issues in the long run, hypo issues in the immediate term. A person who didn't ask to be a diabetic and who is just trying to manage their chronic illness to stay alive and well.

We talk about language in diabetes a lot. Sometimes, that's very valid. Sometimes, not really. In this case and in every stigmatising piece published or broadcast by media, I firmly believe it needs to be called out and corrected in the loudest ways from the most senior people working as advocates. Stigma and the discrimination it breeds is absolutely out of order. 

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Diabetic Oddity

Bowie was superb, wasn't he? Even several years after his death, his coolness only seems to increase with the passing of time. And look at his amazing eyes! - Obviously, I'm going to think that they are cool. I'm not here to talk about Bowie and what a great song Space Oddity is. That's not very Diabetesy. I did hear that song on Spotify, today and when Bowie sang "This is Major Tom to Ground Control" it brought about thoughts of how we describe Diabetes to others and how they ask questions about it to us.

Major Tom/Bowie went on to describe leaving his space capsule and entering the void of space. Bowie was a tremendous lyricist and wordsmith, of course but I wonder if he would've considered a hypo as "floating in a most peculiar way"?

Perhaps he would've come up with a description which is beyond most of us.

Where am I going with this blog? I've made comments about this previously. That the words we use to describe Diabetes, our Diabetes, cannot ever be challenged. I describe myself as a Diabetic or a Type 1 Diabetic. I take blood tests. I try to control my Diabetes.... Oh! Ground Control! Perhaps I'll stop trying to ignore Bowie in this blog and just carry on referring to his lyrics. 

Control is an interesting one. It seems to bring about great angst from some while others use it freely. Myself, I'll use that or "management". There are two reasons for that. Firstly, I'm of a vintage that is not upset by the words used by others unless they are used with the intent to cause upset or are used through hate. Secondly, sometimes, elements of MY Diabetes can be controlled. If an HCP asks me "How is your control?" or "How is your blood sugar control?" my first thought isn't how dare you use 'control' for a condition which isn't controllable! I'm not going to stand up and walk out or aggressively correct them. Instead, my default thought is that they're trying to get a basic grip on how I'm managing, lately. Lots of hypos, hypers, 100% in target, everything in between... something that can be improved? Great! If not, we move on to how magnificent I am. I accept "managing" and "control" in the same way.

I firmly believe that we shouldn't be challenging singular words in such circumstances. Reviews or appointments can be stressful occasions for us, as patients. I think our focus should be on gaining a positive from that 10-15 minute time slot and not leaving the clinic, feeling unnecessarily tense. HCPs are advised and trained on how to interact with patients but they're human beings. Human beings make mistakes sometimes especially after years of using some words which are now considered "No-Nos".

That doesn't mean we should ignore or forgive absolutely everything. I think if your HCP insults you or puts you down, if you're made to feel like a naughty schoolchild, then that's absolutely the right time to be vocal and complain. 

What is correct and not correct in regards to how HCPs interact with us is personal to you. Your own offence is completely valid, of course. I do think it's time that we stopped indicating what is right or wrong, in regards to language, to people living with Diabetes, though. There is no right or wrong. You don't need to change the words which you've been using forever when talking about your own condition. We have enough on our plates, in my opinion. Leave the "correct" way to talk about Diabetes to your overworked and exhausted HCPs. Overworked and exhausted after working in hotbeds of Covid-19 for 18 months - Perhaps something to consider when the next HCP puts a foot wrong.

One thing which I do struggle to control is my coffee addiction...

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Your Words, Not Mine

It's been an interesting couple of days in the world of Type 1 Diabetes, from my perspective. Last weekend, I enjoyed the Connect One UK online conference more than I anticipated. Although I was select in the parts of the conference which I viewed, and that may explain why I was left feeling positive towards the event, I felt it was refreshing to hear individuals talking about their diabetes, or their association to it, using words and phrases which are not always heard at diabetes conferences. In particular, it was lovely to hear Type 1 Diabetics referring to themselves as "diabetic" or "a diabetic". It was lovely because it felt genuine, it felt like their words, it felt unworried, unsanitized! but in a great way!

Discussions followed, as they generally do following a conference, "Diabetic" was in use again in some quarters and I'm delighted. I'm delighted that individuals who manage the condition are talking, engaging and using their words to describe their diabetes and related experiences.

Language Matters has been a well used phrase and hashtag for several years, now. I agree with it. I fully agree that language matters, as attitude matters, as being respectful matters and as every aspect of being a decent human being matters. Sometimes, we'll likely all fail on those "matters" for whatever reason. We're only human and we all make mistakes with the words we use and the attitude we display towards others and that includes HCPs.

So, fast forward a couple of days and I've been discussing an interview with another person who lives with T1D. He's certainly well known to the general public but we're new to each other. Before we discussed the potential interview, he asked for some examples of my involvement with the world of diabetes. Fair enough. I don't keep a list of "things" that I've done which involve diabetes. I remember things! or, at least I thought I did. It turns out that I've stuck my oar into more than I realise. After a search around, I sent some links and more information. I'll wait to see if the interview happens, fingers crossed.

That little digression does relate to the subject in this blog. I found this piece which I wrote in 2018 for Diabetes Voice; The Impact of Language in Diabetes 

That's right, that's me looking sharp in a suit. After reading through my words of 3 years ago, I've come to the same conclusion; That there are far more important aspects of my healthcare than the words used to describe my diabetes, my management of it and its current status. To some degree, attitude pales in comparison to the importance of my health. I'm a friendly chap, generally, I like a chat and try to get along with everybody I meet but I'd rather a horrible, angry, heart surgeon saved my life than my best mate having a crack with a penknife... I'm rambling, sorry.

We're all different, I know, I get it. Perhaps my stance over Language Matters is soft because of the longevity of my T1D and the serious complications which I've battled along the way. Others react in a demonstrous fashion over words and that's fine. I respect that stance. It can only serve to reduce negative experiences to patients in the clinic. 

How much we, the general public, the PWDs, the diabetics! need to be reminded of Language Matters is something I'm beginning to question. To keep the subject relevant with HCPs is something I agree with. To push it via social media again and again? I wonder if it's more a case of Content Matters in some diabetes circles.

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

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Diabetic Superstar

 There are two words in the title of this blog. I'm fine with one, less fine with the other.

"Oh, no! He's going to talk about language matters!"

Maaaaaaybe. Let's see.

Of course, I'm fine with "Diabetic" and always have been. It's a part of my social media username and it's written in the tattoo on my arm. You might say that I'm relaxed about being referred to as a Diabetic. I know some are not and that's equally fine with me. 

My grumble comes over the word "Superstar". It's not only Superstar, it might be "Up and coming rising star" or perhaps "Shining star". Stars get a lot of copy when it comes to exaggerated expressions of praise, don't you think? And praise is good! Praise is right. Praise works. Individuals who do great things undoubtedly deserve praise.

Where the line is between expressing thanks & offering praise and creating a celebrity is what worries me. Celebrity offers many trappings which are hard to resist. I won't use my blog to name-drop but, in a previous life, I've known a few good people, friendly people to become wealthy and famous and subsequently become a very different person. That's a shame but I understand how the voice of an ego can change a person.

So, you're wondering how that might be related to diabetes and who I'm talking about! Firstly, I'm not interested in cryptic messages, subtweets or carry overs from the schoolyard. That's not my domain. I'm blunt and direct much to my cost, at times. I'm not referring to specific individuals here. I'm referring to what appears to be a growing trend of using such superlatives, particularly when aimed towards advocates in the diabetes community.

I've seen such terms directed towards HCPs on Twitter. They deflect it superbly! Often responding with "I'm just doing my job" or similar yet the majority know that's not true and many HCPs go above and beyond the calling of their salaries. They deserve praise but I suspect/hope they'll agree, they're not celebrities and feel uncomfortable to be slapped with the "star" label.

Advocates seem less worried and that worries me.

I think it's impossible for any advocate to truly represent the best wishes of such a huge number of people, such as those living with diabetes. Even a specific type of diabetes, such as Type 1 has almost half a million people trying to manage the condition in the UK alone. The whole subject of advocacy leaves me uneasy but when any one advocate is held on a pedestal, I feel even more uneasy about inflated egos, self appointed voices of authority, individuals who might speak for others, speaking for an entire community without engaging with any more than a tiny percentage of their peers. 

A shift in diabetes advocacy would be a great thing. I think many have heard me and others suggesting this and are acting upon it. A shift in how we praise advocates might also need to be reconsidered. While language matters in regards to being respectful, I think it also matters in the avoidance of creating a celebrity culture, a culture which cannot be good for communities of people living with diabetes. Within the #DOC and #GBDoc it only recently came to light that advocacy resulted in the abuse and sexual harassment of women, as "fame" and status was used to coerce and manipulate members of those communities.

What do you think? Are we in danger of creating celebrities from the world of diabetes advocacy and do we need to be more careful about how we praise those in that arena?

Thank you so much for reading this blog. I do appreciate your visit and your support. As you might know, I LOVE COFFEE! So I've teamed up with a thing called Buy Me A Coffee. If you enjoy my content and appreciate the time it takes to create such things then you can buy me a coffee! If you leave your Twitter @ name when you buy me a coffee, I will personally thank you. If you'd rather be anonymous then that's totally cool. Thanks for the caffeine!

BUY DIABETIC DAD A COFFEE HERE