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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Peer Judgement

I've been a vocal advocate of peer support within Diabetes for a long time. It would be strange, in my position, to not be. The list of support, help and friendships offered to me has been incredible and I'll be forever grateful.

Alongside my peer support gushing, I have been deliberate in my attempts at trying to warn others about the potential pitfalls of engaging with peers within Diabetes circles. The ugly side of peer engagement rarely sticks its head above the parapet fortunately but it is there and as more official avenues of care begin to recognise the positives of peer support, I think it is very important to have a firm safeguarding and vetting procedure in place to at least minimise, if not eliminate, the possibility of damaging engagements between people living with Diabetes.

The Internet is a wild place. Anybody can create accounts and spout all kinds of hate, extreme views or health damaging advice.

"He's clearly not using the technology correctly..."

"Perhaps his grocery bill would be lower if..."

"The truth hurts" - A personal favourite of the peer judges.

Those three came from one person, a person who lives very locally to me and who (at the time) was claiming to be an active volunteer for Diabetes UK. He wasn't a volunteer, of course and it became apparent that he had aired his views about others' Diabetes management across social media resulting in various bans and outrage from other peers.

I think the great thing about Diabetes Twitter is the unquestioning welcoming and support of new people. I hope that remains because we were all newly diagnosed and frightened, once. I hope that remains despite the recent welcoming of an individual who claimed to be a student nurse, recently diagnosed with T1D. Tonnes of love and support from various quarters arrived in his life. At the same time his true colours became apparent. The colours of a racist, ableist, liar. The Twitter community noticed and large numbers were quick to express their displeasure before turning their back on that person.

This week, I passed the two month mark in my pumping journey. It's been great and I felt very encouraged by the real life changes as well as the improved numbers. I tweeted my numbers for a comparison to my life as a Diabetic on MDI. Much positivity followed until this reply:

"So clearly not worth having such an unsightly pump?! What gets to me is how damn ugly & unsexy all related to diabetes is!"

I did reply, later on but when I read that response I was angry. I was angry for others more than myself because I'm a man in my mid 40s and, after living a life with disability, I am almost numb to hurtful comments. I was angry for the newly diagnosed, the children, the impressionable, the low on confidence... I can't imagine how the teenager felt, after starting pump therapy recently, once they had read that response. How would you have felt? So, I didn't reply immediately. I retweeted the comment and invited others to share their views. It's a few days later, now and their tweet is still attracting replies. I think that underlines the strength of feeling and the general dismay.

What does pop up occasionally, if I've highlighted something which is horribly offensive, discrimination or possibly damaging to the health of others is the old "They're allowed an opinion" response. Sometimes dressed as freedom of speech and sometimes with a heavy hint of accusation with a #ThoughtPolice hashtag. Here's the deal; If a person responds to something you've done or said with words that express offense, that they feel discriminated against, that they're worried your words or actions could be damaging, then it's probably not for fun. It takes bravery for a person to call out these things. Then it's down to you to take a breath and consider if they have a point, was it a misunderstanding you can clear up or do you need to re-evaluate things? Perhaps even apologise!? I think everybody should be free to express themselves if that expression is not going to cause distress or damage to another person or persons. That would seem to be a reasonable, kind way to live and engage with others.

Words which struck a chord with me came from Dan Newman (@T1D_Dan) when the subject of harassment came up during an online conference. Dan said that if you read something which you don't like then simply block that account. He's right. You're not obliged to respond to anybody and your only duty on social media is to that of your own well being. You may be questioned, I certainly have been, about why you've blocked X, Y or Z. You don't owe any explanations to anybody. Do all your social media in a way which is comfortable for you and not others.

It seems that peer support could be a part of your Diabetes care through the NHS in the future. To the decision makers, the leaders, I encourage you to tread carefully by vetting each person you enlist, reading their social media and asking others for thoughts. If you offer somebody a job then you ask for references, don't you? and to everybody else online or otherwise; Stranger danger. 

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!

BUY DIABETIC DAD A COFFEE HERE

Fear

 The difficulties of T1D have been chewed over and over for years. New difficulties appear, from time to time, as people become comfortable or brave enough to start talking about them openly. I think we've seen that, recently with eating disorders and the mental health impacts on individuals living with Type 1 Diabetes. 

That's good, right? If we talk and share experiences then others don't feel alone, HCPs take notice, treatments and referrals can happen, we can get better or maintain health. I've always been a sharer in regards to my diabetes and, if you know me well enough you know that I encourage others to talk as openly as they care to.

It's not easy to share. At some point you'll probably be on the receiving end of negativity. Eventually, somebody will likely tell you that you are "attention seeking" or "showing off". That may be true. Social media is a place for seeking attention for engagement and I'm certainly guilty of showing off... I'm a sharer, remember? but for the right reasons. You may also be on the receiving end of self doubt. Did you share too much? Eek! Perhaps it's time for a social media break or to even abandon your accounts entirely and become a lurker, a reader, no longer sharing because it's safer that way. That happens. It's a shame when it does but it's also understandable. The Internet can be a vicious place, a scary place. #DOC is not an exception.

Social media fear is certainly a thing. I know I've written many tweets and decided against sending them. Sometimes I light fires on Twitter but I really do prefer the peace. Honestly, I do!

Fear plays a huge role in living with diabetes. I've read countless tweets from people who are frightened of what's happening to them and what might happen to them. The eye clinic, the lasers, the blood tests, are my kidneys okay? why have I got pins and needles in my foot? That chest pain.... Perhaps some of those are familiar to you. And your reaction? Fear.

Fear of complications and fear of dying seems natural. After 36 years T1D and a good taste of eye complications, I still "feel the fear". I don't think about things each day but, from time to time I get that moment where everything stops and my brain is entirely focused on what I have. Then it's gone. That briefest moment containing all the fear, all the self pity, all the anger and sadness. It might only be a split second! It feels like I've swallowed an anvil. Then it's gone.

What's the solution? 

I suspect the answer is in acceptance and to expedite acceptance probably means therapy, if not for all then for many. 

Right now, I don't think therapy would serve much purpose for me. I do, however think the newly diagnosed should be seeing a therapist as routinely as a dietician, perhaps even more frequently. And for as long as it takes. 

I reached the stage of acceptance a long time ago. Fear still crippled me when eye complications appeared on the horizon. My head went into the sand and instead of facing up to some uncomfortable weeks and months and coming out relatively unscathed, I hid away and my reward was a lifetime of visual impairment after two years of surgeries and pain. 

Would the news of eye complications and an offer of therapy have helped me? Possibly. I may have faced the fear of lasers and injections instead of pretending it wasn't happening. 

Could it help others? Possibly.

Is it time for newly diagnosed diabetics and people diagnosed with complications from diabetes to be offered immediate, on site, therapy as a matter of urgency and total normality?

You tell me! The comments box is below.  

Shares in Diabetes

Diabetes is certainly a long term investment. Selling out would be great, wouldn't it?

Sadly, this particular deal is locked in for life. Unless, of course, there is a cure in around... oh, shall we say 5 years?

I can already imagine that you're reading this and demanding to know what this blog is about. Shares? in Diabetes?

Like the FTSE Check 100? 

Or the Low Jones!

Maybe it's going to be something related to Pharma and their Banting Juice businesses.

No. What I'm going to write about today is the sharing of information in regards to your diabetes. The passing of tips, the screenshots from heaven (or hell), the freely offered resources you have stored in your brain from your diabetes experiences. Perhaps your HbA1c! Eeek!

I think it's all marvellous. I think it's really useful to hear about the experiences of others but not to compare myself or make myself feel like a failure because somebody had a better day than me. It's great to read about the successes and the tone of excitement in a tweet when the sender feels good about how they're managing their condition. I love that! and I take huge encouragement from A1cs which are lower than mine, TIRs that are higher than mine and people living great, long lives with Type 1 Diabetes.

I know sharing isn't for everybody. I know some take things very personally. I can't offer much advice if that relates to you, only that Diabetes is an endless supply of good and not-so-good times. Everybody has had an awful day but not everybody will tweet about it. 

I TRY to offer both sides of my Diabetes "coin". I tweet about the good days, the awful days and everything in between. I tweet about the things that I shouldn't do, such as reuse my needles and lancets, much to the eye-rolling of the DSNs. 

I won't apologise for that and I won't change. I do actually change my needles now, I mean I won't change what I choose to shares. I do my best to be a real diabetic. I do my best to give my honest views about diabetes. I... just do my best, as I'm sure many of you do. There is no such person as the perfect diabetic.

So, take on board as much shared information as you can. Don't try to emulate anything without proper medical advice. Don't be afraid to offer your views or your experience. You'll be surprised at just how many people you're helping.

Talking of sharing experiences! How do you fancy earning an extra £80 for a quick telephone call? I'll let Anne from QualWorld explain:

We are conducting a market research study among young people (16-20) and carers of children with T1D that would like to share their experiences of living with T1D. We would like to hear from carers of babies, toddlers and children up to the age of 13. Teens between 13 and 15 have the opportunity to participate together with their carer or under the supervision of their carer and express their own opinion, but carers can opt to speak on behalf of their 13 to 15 year olds if they wish to do so.
Participants will receive £80 GBP for a 60 min telephone interview.

To take part just visit: http://tiny.cc/r5b8tz

For information email: anne.verbeke@qual-world.com