Diabetes Community Fragments

 

It hasn't been very long since my last blog and I'm glad about that. I seem to be slipping into the habit of writing one or two blogs per week. I write when something related to diabetes is on my mind. Often it's topical, such as the last blog about Diabetes Jokes, sometimes it's simply related to an experience that I'd like to get off my chest. I'm glad it hasn't been long since my last blog because that particular incident ended on a positive note and I feel like I can move away from that, at least for the time being! and talk about something else.

I intended to write about peer support in the Diabetes Community, over the Easter weekend. That was put on the back burner until today. Now, it's time to boil up that pot!

There has been a lot of chatter stemming from some of the larger Twitter accounts about peer support within DOC, GBDoc and many other area specific communities, of late. What usually happens when a few larger accounts "make some noise" is that many others suffer a severe case of FOMO. What on earth is FOMO? It's Fear Of Missing Out. From there, those accounts will usually jump aboard the bandwagon, whether it is positive or negative in nature. FOMO is a real thing for some diabetes related accounts, as is the need to stay relevant and have content. I'll get back to that on another occasion because I'm digressing and that is a subject for a blog all on its own.

Peer support! Yes. We love it, don't we? The drum that I've been banging around peer support is very much a beaten one. I've spoken about the positives and the huge impact it has had on my diabetes management, from overcoming social anxieties to accessing diabetes technology and everything in between, not least gaining lots of friends along the way. I am massively grateful for my peers, mostly within #GBDoc #IREDoc and #NIDoc and I will happily give those people my time and support whenever I am able.

It sounds fantastic. It mostly is. There are, however things I'd like to note and offer some caution over:

- Peer support isn't for everybody.

Just as tech isn't for everybody and we're all different in the way we manage our diabetes, it's important to realise that peer support won't be welcomed by everyone. To have it offered and easily accessible is wonderful but it should never be forced on a PWD. As peer support talk is appearing in healthcare circles, I am very interested to see how this is brought into conversation between HCP and patient.

- Fragmented communities.

It's a schoolyard out there. Ready for a few negatives? Envy, Bullying, Harassment, Stalkers, Drama, Sex, Lies and Videotape!  All of those things can happen in any splinter of society. The more people that are clustered together, the more chance of something nasty happening. From the nasty incidents, the communities become fragmented as individuals "take sides". The subtweets begin, the DMs are sent... sigh, it can get very teenagery even among mature adults. Eventually, people grow tired of the drama and aggression and they leave the community or lock their accounts or simply block those who are the sources of negativity. Personally, I'm a blocker. 

- Leader of the gang.

Does a community need a leader or leaders? I've debated the issue with friends many times. I'm swayed towards No. I've heard some people describe others as "Prominent members of GBDoc" in reference to holding their views in higher regard. That sits uncomfortably with me and has a strong odour of The Old Boy's Club about it. It hints at a pecking order which shouldn't exist on a free to use social media platform. Status and follower numbers do not influence me. I think it's important to hold each other in the same high regard unless words or actions indicate otherwise. So, should Peer Support "Leaders" become a thing then I think we could be in danger of following the path of Advocates and frequently heard public speakers. Which path? Read this blog: Hearing Voices I really hope we don't repeat the mistake of repeating the voices, should the NHS begin selecting peer support leaders.

I've expressed some caution there but please do not be put off diabetes communities. Where ever you find one, which might be helpful to you in managing your diabetes, join in and engage. For the most part, they are wonderful places with wonderful people.

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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Diabetes Jokes

You already know where this blog is going, don't you? That's right! Easter arrived and the classic Diabetes "jokes" hit social media, as they do each and every year. Oh, how we didn't laugh again.

I understand why people try to be funny online. Sometimes, I make a funny on Twitter and it gets a lot of attention. The likes and comments feed into our need for... likes and comments? It makes us feel good to get positive attention by making others happy. Of course, what is funny to some is not funny to others. That's why we enjoy different jokes and the different comedians, I guess. 

I'm old enough to JUST remember the notorious famous comedians of the 1980s. Roy "Chubby" Brown, Jim Davidson, Bernard Manning, et al. Their routines were largely based around sexism, racism, ableism and generally being incredibly offensive. As we edged into the 90s, such characters became less popular and their acts were only seen at British seaside towns such as Blackpool. Eventually, they faded away from the public eye as comedy rapidly cleaned up its act after the turn of the millennium.

Phew! So, that's that. The nation grew up and we enjoy "smart" comedy now. We do, don't we?

Step forward Richard Osman. Much respected co-host of Pointless, host of House of Games and occasional sofa warmer on The One Show. Richard is widely regarded as a bright chap. He comes across as witty yet warm and friendly. Certainly not the sort of comedian to compare to Manning & Co. So, it was a surprise to read this tweet on Easter Sunday morning:

UPDATE: Richard deleted the above tweet and tweeted an apology here: https://twitter.com/richardosman/status/1379101305164201991?s=19

I am almost certain that Richard is not a malicious chap. The nature of the tweet isn't aggressive, in my eyes. It seems he is trying to raise a smile with a little poetic humour. 

It's not funny.

It's actually very damaging.

Richard has over one million Twitter followers and that kind of social media clout can certainly influence the thoughts of many people. That kind of ignorance can breed stigma, it can breed bullying and it can breed the discrimination many people living with diabetes face. It's ableism. Now that a well known TV personality has published this tweet and (at the time of publishing this blog) has not deleted it or offered an apology for the offence caused, it would seem only logical that young minds, ignorant minds and those who enjoy bullying and upsetting others will repeat it. Perhaps a child will say the same words to another, at school, after the Easter break? Well, Richard from the TV said it! It must be alright.

It's not alright.

Diabetes (note; I'm not referring to type here because ALL types) is recognised as a disability. It appears to be one of the last disabilities that is acceptable to use as a punchline.

It's not acceptable.

Some have replied to Richard's tweet to give him advice on this. Richard replied to a positive comment and (so far) hasn't addressed a single person who explained what the problem is. Silence.

"Lighten up!" exclaimed one .I was almost expecting a "It's only banter, mate!" reply. Obviously the "Joke Police" got a mention. Where would we be without someone referring to The Joke Police, The Thought Police, etc? Thank goodness for that particular reply! Calling out people who make discriminatory comments must have been the issue all along! 

I'll drop the sarcasm.

We all make mistakes. Only last year, I retracted a tweet which wrongly mentioned age and sex. That tweet had a lot of likes and retweets but I recognised that I was wrong to mention anything other than a particular person being a monumental idiot. That was the end of that and that's all Richard needs to do. A simple apology and tweet deletion. He'd regain the good faith of the fans he's lost and, who knows? maybe gain increased respect for acknowledging his offensive tweet and perhaps become even more loved than he was before last Sunday morning.

Joke about your own conditions and disabilities, by all means. Leave everybody else alone.

 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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Unsolicited

 

Splainers Gonna Splain

"Mansplaining" has been a well used term in social media circles for years, now. If you Google "mansplain" then the definition you get is as follows:

(of a man) explain (something) to someone, typically a woman, in a manner regarded as condescending or patronizing.

That seems accurate. You don't need to search too hard to find incidents of mansplaining on social media and in everyday life. I don't know why men do it, I don't know why I've done it! I'm certainly guilty of being that person, previously. I think the majority of splaining comes from a good place, a helpful place. However, it is condescending or patronising in many cases and since becoming more aware of that I have tried to refrain from doing it entirely.

Strangely, everybody can be the victim of a splainer - including me. In fact, I've become the target of splainers more often in recent times. That might be because of lockdown and individuals spending more time online rather than interacting face to face. That splaining itch just has to be scratched!

I've begun to pay more attention to who is splaining, especially on Twitter, and if it's just me that is the target of such knowledge sharing. Men are largely the guilty party but there are women who are also keen to offer unsolicited advice. It is generally the "qualified" who are at the front of the advice giving queue. I've used inverted commas around qualified because just how qualified these individuals are is certainly debatable. Some are HCPs and, worrying, offer detailed medical advice based upon a tweet by another. That's pretty dangerous stuff and the primary reason for writing this blog.

Some of the unsolicited advice that's come my way has involved suggestions to change my basal insulin, to change the dose of my basal insulin, to take a trial of a patch pump, to go on a DAFNE course, to visit XY & Z's website to learn how to exercise with T1D, to "Read a blog that I wrote" about whatever I happened to be tweeting about, to consider protein amounts in food... I think some of you may even remember my "destructive" cheesy chips thread? and on, and on, and on it goes.

It is infuriating.

I understand that the majority of unsolicited advice comes from the heart and is intended in the best possible way. However, I am a 44 year old man. I've had T1D for 36 years. I have a very good A1c and a very good time in range. If I need or want to learn more about any given subject, diabetes or otherwise, I have this new-fangled tool called The Internet, which is bursting with free advice from recognised authoritative sources. If I cannot find the information that I need then I will ask for help, sometimes that'll be via social media. THEN, splainers is your time to shine and not before. By all means ask if I need any help or advice and offer yourself - that is absolutely wonderful and kind and the right thing to do. 

I know this is another ranty blog and I'm a little bit sorry about this one, as opposed to the last one, because I know splaining isn't a malicious act. Please, splainers try to think about your replies to the social media posts of others. Please give help and advice when it's asked for and not otherwise. 

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

Freak Like Me

 

I'm sorry about the photo. I know scary clowns are a little too scary for some! Ignore him and look at these words instead:

Disability discrimination

It's at this moment that I expect the vast majority of you to leave. That doesn't surprise me. The subject of ableism appears to turn off a good number of people. It's uncomfortable for many, as seeing disability is, as my own disabilities are.

In an earlier blog, I mentioned a time in my childhood when I first encountered hate towards disability. It was 40 years ago and I suspect if it happened today, in this country, there would have been far more serious repercussions for the perpetrator. Thankfully, things have improved for people living with a disability. I haven't experienced anything beyond schoolyard jokes (apart from one incident in a pub) and comments since... well, school. One of the latter experiences of school ableism was a time when I was referred to as a "freak". I'm pretty laid back and can sometimes turn hatred into a joke. That ability saved me from bullies on several occasions, that and having a few very tough friends. Obviously (watch it!) that was quite a while ago but that doesn't mean it has gone away.

My experiences of ableism revolve around Internet communities. I suspect that to be the case for other forms of discrimination. We hear a lot about racism directed towards sportspeople via social media. It's a massive problem, along with other forms of discrimination and hate, but I'm aware that it isn't only dished out by bigots with keyboards. The same applies for ableism. Just because I haven't experienced it in real life recently doesn't mean it isn't there and isn't happening to others frequently.

This is a tweet from my friend, Meg

Pretty nasty, huh? I don't get it. Is it funny to shout out remarks and mock strangers in the street? I know the answer, of course but what is going though the minds of people who do this? Are they living a troubled life and openly mocking a woman with a disability makes things better for them? I have so many questions. Perhaps it IS funny to them and can be spun as "banter" as many incidents of hate are. 

"I was only joking, mate!"

Oh, right. My bad. I thought I was the circus freak, doing the funnies, not you. 

It's very easy to search social media and find other instances of a similar nature. Sometimes, you don't need to search. It might just appear on your timeline because it's one of your friends who has experienced it. Support your friends/followers, please. If they are brave enough to mention their disabilities and why something is hurtful then the first thing you do is believe them. Don't tell them they're being sensitive or reply with various hashtags, sarcastically referring to "Thought policing". Don't suggest they report the tweet if they find it offensive, either. We all know Twitter aren't acting on any ableism because we, the disabled, cannot possibly be offended or stigmatised!

This has become a slightly ranty little blog and for that I make no apologies. Please:

- Do not mock or shout hurtful comments towards disabled people. This may be considered a hate crime in the UK.

- Do not joke about disability in any form unless it's YOUR OWN disability.

- Do not suggest things to "improve" a service which completely alienates people with a disability. That sort of ableist trash is all over social media. If you have an idea then consider accessibility before anything else. If somebody calls you out on it then adjust your idea or remove it. 

Why wouldn't a person do those things as a basic starting point? Perhaps they don't like a disabled person, being superior to them by noting their discriminatory nature.

I'll put my soapbox away, until next time.

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

Use The Force

 

Do you ever look at a meal, a plate of food, a snack and just know what the carb count is? Maybe you've gone a step further? Not only do you know the carb count but you know exactly what to bolus and when to bolus to get your blood glucose back into range, soon after you've eaten.

Do you sit there, feeling all smug like some kind of diabetic Yoda? Good! You probably should. Diabetes is work and getting things right is something to celebrate.

I think we "use the force" in many aspects of life, particularly health. I'm willing to bet that some of you have guessed what dose of pain relief you needed for a headache. One paracetamol... two... maybe two with a couple of Ibuprofen, a few hours later. Wow! it worked. The headache is gone. Headache Jedi, we are. (sorry)

I'm not sure Obi Wan & co. can take the credit for our health treatment successes. I think this is because we know our bodies and how they react. Sometimes we make conscious decisions about our health and sometimes things just seem to go into autopilot. Sadly, as we age and get more experience of ill health I think we retain a subconscious knowledge which we call upon when treating common ailments or, indeed a chronic condition such as diabetes which we've become conditioned to living with.

You might refer to the bolus doses and carb counts as guesses but, after a while with diabetes, I'm not sure that's entirely true. All those meals and injections (or pumps), the maths, getting it right or wrong and the information presented to us or felt by us physically - does it just vanish or is some of it stored inside our heads beyond memories of the events? Easy, Diabetic Dad, this is getting deep.

Take hypos. (Please take them!?). We're told what to consume when we're below a certain level of blood glucose. If you're dropping 0.1mmol every 5 minutes and you've just crept into the red zone then sure, you might stick to the rules and eat the recommended amount of carbs because you know you're not in any real danger. If you're dropping 0.5mmol every 1 minute, you're shaking, rapidly heading south and your back looks like a waterfall then you're unlikely to be sticking to the rules because you're not thinking clearly, you might be panicking and hypo hunger is a real thing sometimes! Yet, you probably realise that you're in greater danger at that stage. You probably realise that counting out 6 Jelly Babies isn't very important. You probably realise the only number that needs to be given any attention is the one on your BG meter or CGM. Let the feasting commence! That may have happened to you previously. It's certainly happened to me; a time where little thought or brain power is used, it's all action and a carb frenzy. Then you feel better. Later you're a little high but you're not in danger so your brain drops out of survival mode and you calculate your insulin correction dose. Of course, some of you might be lucky enough to have the technology which informs you of you insulin on board, the speed of the decline of your blood glucose and how many fast acting carbs you'll need to consume. But... perhaps you have that tech and you still go overboard because of survival autopilot.

I know I've used the words "You" and "Your" and "You're" several times, there. That is just a generalisation of what some people living with diabetes might have done, including me. I do dislike talking about the diabetes of others in a way which must reflect my lived experience. That would just be terribly wrong of me.

Moving on! and to conclude, I think we as people with diabetes, regardless of type, are under tremendous stress and we carry a huge burden by simply living with our condition. The number of additional decisions made per day, compared to a person without diabetes, is huge. Those decisions require brain power which can sometimes be utterly exhausting. I think it's entirely normal to sometimes trust in your instincts, subconsciously act and "use the force" to act or react in regards to your diabetes management.

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

Kindness in Clinic

 

It's been a week, a tough week, for many in the UK. We celebrate Mother's Day under a very dark cloud for women in this country and around the world. Sometimes it's difficult to put yourself in the shoes of others but as a man, somebody who shares the same sex as the majority of people who commit horrific crimes against women, I think the least I can do is to read some of the shared experiences and try to understand what women go through. Beyond that, if I can change my own behaviour for the better then I will.

I tried to do the "read, listen and learn" thing during the peak of Black Lives Matter. I still do. That issue and others have not gone away.

How we treat others, how we address them, how we judge them and the tone we use is something very often "chewed over" by the diabetes community. Some stories are very concerning and remind me of my own bad experiences of diabetes clinics. Would you like a little story? Alright then! Not that you have a choice. I'm telling it:

After a few years of living with T1D, I began to relax a little too much with the condition. Finger pricks were not happening very often and I was eating and drinking anything at intervals which suited me. Pretty normal behaviour for a teenager, I guess. Of course, that behaviour resulted in a noticeable change in my HbA1c. I don't recall the numbers but I remember one particular incident which, even at the time, struck me as totally unacceptable. I saw my then DSN, following news that my last A1c had increased. The conversation began with suggestions that I was an angry young man. (She was right, I was a teenager with a chronic condition, given no psychological support. I was pretty tetchy!) Followed by news of what will happen to me in the coming years if I didn't get a grip of my diabetes. Once the fear mongering over blindness, kidney disease and heart attacks had concluded we (she) moved on to amputations. "I think I should take you to the amputations ward, then you'll see what will happen to you unless you sort yourself out."

Little wonder, you might think, that I stopped attending diabetes clinic appointments at the first opportunity, as an adult.

That tale was from the late 1980s / early 1990s. Over 30 years later, things are different. However, the fear of HCP tone, attitude and judgement is still a thing and not just for me. How do I know? Take a look at This Poll on Twitter

Firstly, let me just say that 291 votes is absolutely NOT a true representation of the diabetes community. It is a TINY fraction of the people living with any type of diabetes. Secondly, I was wrong. I was surprised at the results. I really expected the fear of complications to be an enormous winner. It seems apparent, at least from this little poll, that HCP tone, attitude and judgements are very much on the minds of some when attending their appointments. I think we still have some way to go in that regard.

Kindness in clinic is not a one way street. Kindness towards HCPs is not only for clinics, either. Would you like to know how I start every appointment?

"Good morning/afternoon Mr, Mrs, Dr or even first name terms. How are you?"

Don't get me wrong, I don't really care that much! This is my appointment! but I do think it's a polite thing to say and it gets the appointment off on a friendly footing. 

Would you like to know how I communicate with HCPs on social media?

Politely.

My past experiences with HCPs have no impact on how I communicate with others, today.

HCPs are people, too. They mostly have very demanding jobs, families, relationships and health concerns of their own. They don't deserve to be hauled over the coals by people they might have never met or even interacted with. And sometimes for the most ridiculous of reasons! The defaming of some has been appalling and that needs to end. If you're happy to make hurtful comments about HCPs that you've never met then I really think you've no business to advise others on kindness.

That's it for today. I encourage everybody who reads my blog to try to be a little kinder to everybody around them.

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

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