40 Years a Type 1 Diabetic

 

Life moves pretty fast. If you don't stop and look around once in a while, you could miss it

Ferris (what a great movie) was right! Life can get pretty hectic at times. If you take a moment to stop and reflect, it can give you some perspective. It's difficult to get any time in December. It's always been a chaotic month for me, and this year is no different from the previous ones. I have new commitments through a busy job, social engagements, and the usual demands of Christmas. In the midst of all that, my coffee machine decided to die. What a disaster!

Diaversary

All that aside, it did occur to me that I am fast-approaching 40 years with type 1 diabetes. I've written about my diagnosis story many times, so you don't need to be worried about another repeat this year. I don't celebrate "diaversaries" for several reasons primarily because it's my bloody birthday on the same day and T1D gets plenty of attention already. 40 years is an inescapable milestone like the passing of every decade. It's been a long time since I wrote a blog post, so this seems like a good time to offload some thoughts about longevity with the pissing evil.

Diabetes Advocacy and Authority

I don't consider myself to be any sort of authority on T1D. I've spoken and written a lot about it especially over the last seven or eight years. That doesn't really mean a great deal. Anybody can write blog posts, publish videos and, if you make enough noise, find yourself behind a podium. You might use social media, too. That's a tremendous source of information still despite some platforms being a bit poisonous. Doing those things can be helpful to others and that's a wonderful thing. You could find yourself with the title of "advocate" or you might give that to yourself. Still, any number of posts, videos, talks, and years with T1D only makes you an authority on one thing; your own diabetes... and that might also be debatable!

I suspect a tiny number of you might be upset by the last sentence or two in the above paragraph. I'm sorry, don't take it personally. I'm sure you're very knowledgeable and you probably know a great deal more about type 1 diabetes than I ever will. That said, you can never know more about my type 1 diabetes than I do. That's likely the case for many other individuals.

Advocacy is a great thing! - I had to write that before the social posts begin about me targeting advocates. I'm not, I promise. Advocacy brings about change in many ways. It can help those less fortunate and it creates movements that will positively change diabetes care. If you consider yourself to be an advocate and you're pushing for positive changes, then do not stop until it happens.

Longevity with Type 1 Diabetes

Longevity doesn't automatically mean authority (or advocacy) either. It might mean increased knowledge due to more time to learn, understand and gain lived experience. But authority? I think that's a tag that should be reserved for professors, in a generalised diabetes sense.

We should also be a little more respectful of people who've had diabetes for any length of time. From Day 1 to Year 100, it's no picnic. If it was a picnic, it'd probably be pizza with a full sugar Coke. It seems that relatively new people to the condition are offered less time and acknowledgement than those with a few miles on the clock. Respect your elders by all means, but this default way of thinking is surely leaving very bright minds and voices in the shadows while the same tired narratives are churned out time and again.

I've written about the need to hear from different people before. Things have improved. There is more diversity in the voices heard these days. That warms the heart and I hope to hear more in the years to come. Diabetes (any type) care will shift and with that, we should welcome the thoughts and experiences of new voices.

Type 1 Diabetes Cure

I did a little sick in my mouth when I wrote the above heading. Like many of you with type 1 diabetes, I've read a lot of headlines, promises, and hints. What sits heavily in my gut are the charities rolling out the tried and tested method of attracting donations with cure research announcements. I don't speak for any of you readers, but I've had my fill of it. Even in my early non-Internet days with T1D, I was still exposed to charities talking up their incredible cure research. Here we are, decades later, cureless!

Another little paragraph to reassure charities. You're doing a great job in supporting folk with T1. Undoubtedly, there are instances of support that has improved the life of a type one diabetic. I'm not targeting your organisation, I promise. Please could we tone down the "money for a cure" stuff, just a little? If your research does get us over the line then I'll sing your praises like everybody else.

Since my diagnosis in 1984, I've hoped for a cure. Life with T1D is a lot easier than it once was, but I'd still crawl through fire for an immune system that didn't kill my beta cells. I've been very open about my cure thoughts before. Again, I don't think it'll happen in my lifetime. Our technology will make life with T1 less burdensome, it already is for some, and it'll likely continue in that way. That's not a cure.

Living a Good Life with Type 1 Diabetes

Some chest offloading has happened above. So, let's end on a positive note! with a few words for the diabetes newbies, and the crusty old diabetic gits like me.

Recently diagnosed with Type 1 Diabetes?

Hi, welcome to the club that nobody wants to join. Yeah, it sucks. Take a breath. This condition is not going to kill you unless you're really unlucky or really neglectful of it. Pay attention to your diabetes team, especially the DSNs (Diabetes Specialist Nurses - they know everything). You're going to need to attend your appointments, have some blood taken, your feet tickled and someone will make your eyes sting so they can take a look at your retinas. You'll need to accept those things and go along with any treatments you might need. 

You're going to need to administer insulin every day. I know, injections sting. After a week or two, you'll be less worried about that. You'll need to check your blood glucose, too. Don't fret about high numbers too much to begin with. Just correct those in the way you've been taught. If you're confused or worried, talk to your DSN.

Be cautious about advice on social media, especially advice around diet. Diet changes do not cure T1D. You might find some foods make it easier to keep your blood glucose in range. Let that happen in time. You'll find a way to eat what you want. Personally, I eat anything and everything. 

Diabetic Oldies

You don't need my words. You've come this far without my advice. Instead, I'll offer this to you: Be kind to newbies with type 1. They deserve your respect as you might hope for theirs. If you can offer some support and advice, then do so. Try to not jump in as the "big I am" or an authority with diabetes for X years. Stay humble and help out when you can.

Merry Christmas

Thank you for reading. I hope you'll all have an amazing Christmas and don't let diabetes stop you having fun.

All coffee donations will be forwarded to Action4Diabetes. 

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The Power Of Sharing

In the world of diabetes management, every day brings unique challenges. Yet, through the power of advocacy and awareness, individuals with diabetes are finding the strength to face these challenges head-on. This blog post revolves around a compelling story shared to me by an online diabetes peer, which beautifully encapsulates the impact of diabetes advocacy and the resilience of those living with the condition.

Our peer shared a moment from their life that unfolded during a seminar. It was a day like any other, but their insulin pump had other plans. It malfunctioned, resulting in high glucose levels—a situation that can be unsettling for anyone. Instead of feeling embarrassed, this individual demonstrated remarkable composure. They calmly injected insulin and replaced their pump set right there in the room, without leaving or excusing themselves. In their own words, they did it "like it's a normal thing...which it is apart from injecting."

Here is their message, shared with permission: 

This story carries a profound message, not just for people with diabetes but for everyone:

The Power of Advocacy: The online diabetes community, along with dedicated advocates, has played a pivotal role in raising awareness about diabetes. Their efforts have contributed to a more informed and understanding society, allowing individuals like our peer to feel supported and empowered.

Breaking Down Stigmas: Our peer's ability to manage their diabetes openly and confidently challenges the stigmas surrounding the condition. It exemplifies that dealing with diabetes, even in unconventional situations, should be normalised and accepted.

Self-Empowerment: This story is a testament to the resilience and self-empowerment that individuals with diabetes can cultivate. When people understand that diabetes is a part of life but doesn't define it, they can confidently manage it without feeling the need to hide.

Inspiration to Others: The courage displayed by our peer serves as an inspiration to me and I hope others in the diabetes community. It shows that unpredictable moments can be met with grace and that diabetes doesn't have to hold anyone back.

The Importance of Preparedness: While managing diabetes is a day-to-day reality, moments like the one our peer experienced highlight the importance of preparedness. Knowing how to handle such situations and sharing this knowledge can benefit the entire community.

This story is a testament to the transformative power of diabetes advocacy and the resilience of those living with the condition. Through advocacy, we can break down stigmas, inspire self-empowerment, and encourage a sense of normalcy in managing diabetes. Our peer's experience during that seminar is proof that, with the right support and awareness, individuals with diabetes can confidently navigate even the most unexpected moments with confidence, ensuring that diabetes doesn't define them, but rather, becomes just another part of their remarkable lives. 

I talk about my diabetes a lot and I do that simply to share my experiences. Remarkably, that simple act can have a hugely positive impact on others. I strongly encourage you, reader, to share your own experiences about diabetes. 

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The Blue Tick

It's been a couple of months since I took "the plunge" to verify my Twitter account. Of course, that's now a verified X account following the rebranding at Musk Inc. It has raised a few questions and conversations, primarily "why?!" especially as the recent changes at this platform have caused many to move to other areas of the Internet for their socials. I thought that I'd clear things up with a blog post, instead of writing a really long tweet... xeet? Whatever.

In today's digital age, social media platforms have become powerful tools for advocacy and awareness campaigns. Twitter, with its extensive reach and real-time engagement, stands out as a platform that can significantly amplify the voice of advocates. For individuals advocating for diabetes awareness, being verified on Twitter holds immense importance. Twitter verification is crucial for diabetes advocates, especially those (like me) who are not professional advocates. Below, I'll look at how it enhances credibility, increases visibility, and facilitates meaningful connections within the diabetes community.

• Credibility Amplification: Whether we like it or not, for many, verification on Twitter symbolises authenticity and credibility. For diabetes advocates, whose primary goal is to provide accurate information and create awareness, being verified adds an extra layer of trust for their followers. Verified accounts are perceived as authoritative sources of information, allowing advocates to spread accurate details about diabetes management, treatment options, and lifestyle changes with more impact.

• Enhanced Visibility: Verified accounts are more likely to appear at the top of search results and in relevant conversations. For diabetes advocates, this visibility boost is essential in ensuring their messages reach a broader audience. With the ever-increasing volume of content on social media, standing out from the noise is crucial. Verification ensures that the important messages of diabetes advocates are not lost in the crowd, enabling them to effectively reach people who need accurate information about the condition.

• Access to Features: Twitter verification comes with access to advanced features, such as analytics and insights into tweet performance. This data can be incredibly valuable for diabetes advocates, as it helps them understand what type of content resonates most with their audience. This information can be used to tailor their advocacy efforts, refine their messaging, and optimise their engagement strategies.

• Collaboration Opportunities: Verified accounts are more likely to be approached for collaborations, partnerships, and joint initiatives. For diabetes advocates, this means increased opportunities to collaborate with medical professionals, researchers, organisations, and other "influencers" in the healthcare space. Collaborations can lead to more comprehensive and impactful advocacy campaigns, furthering the cause of diabetes awareness.

• Building a Stronger Community: Verification status fosters a sense of community among advocates, creating a network of credible voices in the diabetes space. Verified advocates can connect more easily with each other, sharing insights, experiences, and strategies. This sense of camaraderie strengthens the overall impact of their advocacy efforts and encourages the exchange of knowledge within the diabetes community.

• Countering Misinformation: This is one of the major pulls for me to be verified. Diabetes advocates often find themselves combating misinformation and myths about the condition. A verified status on Twitter empowers advocates to debunk false information with authority and credibility. As misinformation spreads easily on social media, having verified advocates actively participating in these discussions is essential for steering the conversation in the right direction.

In a world where social media has become an integral part of advocacy, Twitter verification holds undeniable significance for diabetes advocates. The benefits range from amplifying credibility and visibility to enabling collaboration and providing access to valuable insights. By becoming verified, diabetes advocates can leverage their status to create a more informed, connected, and empowered diabetes community. As the digital landscape continues to evolve, being verified on Twitter is not just a badge of honour; it's a tool that can drive meaningful change and make a lasting impact on diabetes awareness.

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Due Diligence

How is your Diabetes Awareness Month going? Still aware, I know. Hilarious jokes aside, there has been a lot of really good information and experiences shared on social media. Yesterday, World Diabetes Day, saw the awareness posts increase further and I think that's a great thing. If we want others to understand the condition which we try to manage 24/7 then it makes good sense to talk about it openly. 

It makes good sense for the people living with D, the Diabetics, to talk openly. Even if the facts aren't always correct, you'll still read first-hand lived experience. I've been an advocate of talking for several years now because, for me at least, it is a source of therapy, information exchanging and a super way to just vent about my T1D.

As individuals, we don't really need to perform much due diligence ahead of publishing our thoughts. It might be a good idea to hold fire if you're angry or upset or going through a rough time with your mental health but I think on a general day we can simply hit the Tweet, Post, Submit, Send buttons without much of a care.

In the world of health care, for profit or otherwise, I think far more care is needed and I think that there is enough information and help around for any business to avoid the brown hitting the fan. That is especially true if your business is Diabetes focused. Then you really need to be getting the right people to give you the right advice because nobody loves a pile on like social media folk while trying to balance their blood glucose levels. Some of us are happy to highlight the damaging, too. What sort of advocate would I be if I didn't vilify the hurtful and stigmatising of my peers? A pretty bad one, I reckon.

I don't actively hunt for the trash content, I have a life. I will amplify it when I see it. I might have a little sarcastic rant or simply pose an open question. Of course, how a business reacts to that is their "business" and how I give my support to them in the future, if I amplify their campaigns, if I accept any work from them, then depends on that next reaction. I think that's the correct way to behave in most aspects of life. See a mistake, highlight the mistake, wait for correction (or not) then move on in whatever direction is most morally comfortable for you.

The World Health Organisation posted some pretty awful things in relation to Diabetes on World Diabetes Day. Normally, I would include a link or a screenshot here but I think many of you have already read that rubbish or it won't take you very long to find it if you haven't and you're very interested. It's disturbing to think that an organisation of that size cannot hire somebody to perform some fact checking over their Diabetes posts and infographics. A little due diligence for the care of their 10.1 million Twitter followers, especially those who live with Diabetes, shouldn't break the bank. I imagine the right Diabetes advocates would offer their time for free for such a thing. 

That is not the WHO's only "gaff". They were busy stigmatising during their Compact summit in April. 7 months later and more trash from the same organisation. I could talk about some of their Covid-19 posts, next. The list is starting to look pretty long and very, very trashy. 

So, right now, that's me done with the WHO and everything related to them. I'm sure they'll cope without me. It was all a bit downhill after Baba O'Riley anyway.

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 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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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