Showing posts with label doc. Show all posts
Showing posts with label doc. Show all posts

Saturday, November 18, 2023

Let The Storm Rage On

...the cold never bothered me anyway? Well, tis (almost) the season for such movies. You might have realised from the image above that this isn't a blog post about Frozen or Christmas  Instead, I'd like to talk about everyone's favourite subject; social media. Gah! I know quite a lot of you are now going to close this window, unfollow me, throw away your phone and report me to the police. I might deserve some of that! I mean, have you READ my tweets?! Jeez!

For the handful of you who remain, let's get into it. Sometimes, I "do a lot of socials" and not just for myself. From time to time, I work for others (volunteered and paid roles) alongside my own blathering. It's cool, I like the interactions and social media has opened a world of experiences for me. It's helped my health, too. My T1D is unrecognisable from what it used to be just 6 or 7 years ago. That's an incredible thing if you really consider it. It also paints the general population in a great light, especially diabetics, as they are the driving force behind my current diabetes management and stable health.

I've thanked the online diabetes community in several blog posts and posts on socials. They truly are a great bunch and if you're new to that world, embrace it and soak up all the info and support that you need. In other posts, I've issued warnings to people to be cautious online. Despite the majority of people having no agenda but to assist others and gain their own support, there will always be a minority who are looking for something else. What are those things? The list is likely long, but you can probably include; using others for profits, career progression, gratification, and self promotion. I've experienced those things and more. Perhaps you have, too. Whilst that's sad, particularly as the diabetes world is focused around health, it's not very surprising. This is the Internet, of course!

Part of the online diabetes community is GBDoc. You're probably aware of it if you stumbled upon this post via a link on one of my socials. I've had a lot of involvement in that community and, again, it's been tremendous. When I began tweeting about diabetes, I was very determined to not involve myself with any community or organisation. That probably lasted about a month! and after a year or so, I was asked to be a volunteer along with several others. Volunteers have come and gone in the last 5 years. They had their reasons and their departures didn't affect me. We remained friends, largely, and some are still kicking around on socials today.

And now it's my turn to depart.

I've simply lost the motivation to continue to freely give my time to GBDoc. There are reasons for that and there are absolutely a select group of people who are behind those reasons. To detail each would result in a very long blog post and it would probably create an online inferno. My own personal attacks have included accusations of stigmatising others, subversive posts that target others, discriminating against others who are not British, not fact-checking things I retweet (because I'm CNN, obviously)... and I'm going to stop there because even as I type those things, and even after some time has passed, I feel affected by those accusations and the shocking levels of entitlement to tell me how I run my own personal account. I'm not perfect. Indeed, there have been times when I've corrected or removed something I knew to be wrong or even something that could be misinterpreted. Over the years, I've listened to others and made apologies for my own errors and, unnecessarily, the misinterpretations of others. Those instances were on Twitter (now X) which has never really been the easiest place to read tone from or gain much from in the way of great detail - unless you have a verified account and you love writing essays, of course!

I'm not looking for sympathy. However, I feel sorry for my friend, Jules. She's well known for living with some serious conditions which are exacerbated by stress. To listen to her breaking and tearful about the whole saga was very tough. The non-apology and the carry-on-regardless nature of those involved was bewildering. "Bewildering" was the best I could muster after deleting various expletives. Of course, you should form your own judgements if you wish, but from someone "on the inside" I know the hurtful remarks made about GBDoc volunteers (managed by Jules) were so far removed from reality. I hope that she'll come back one day. I'm sure the community will continue to thrive in whatever guise. 

There is much more I could add to this post. I may follow up at a later date. There will, of course, be more blog posts on other subjects in the days, weeks and months to come. If you're from GBDoc, it's been lovely to volunteer for you since 2018. Stay well. 

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Wednesday, April 5, 2023

Diabetes Abuse

 

Living with diabetes can be a challenging experience, and connecting with others who understand what it’s like can be incredibly beneficial. However, as with any community, there can be issues that arise, including abusive behaviour. Unfortunately, even within the diabetes community, there are people who engage in abusive behaviour towards their fellow diabetics. This can take many forms, from bullying and shaming to outright harassment and intimidation.

It’s important to recognise that abusive behaviour is never acceptable, regardless of who is engaging in it or why. No matter how frustrated or angry someone may be, it is never okay to take that out on another person, especially someone who is dealing with the same struggles that you are. In fact, engaging in abusive behaviour towards other diabetics is particularly harmful because it can undermine the sense of community and support that is so important in managing diabetes.

Here are some of the reasons why it’s essential to not accept abusive behaviour within the diabetes community:

• It undermines the support system

One of the most significant benefits of the diabetes community is the sense of support and understanding that it provides. When you connect with other diabetics, you can share your experiences, exchange advice and tips, and find comfort in the fact that you are not alone. However, when abusive behaviour is present, it can erode that sense of support and understanding.

People who are subjected to abuse may feel isolated and alone, as if they have no one to turn to who will understand what they are going through. This can make it more challenging to manage diabetes, as the support that they would usually rely on is no longer available. It’s essential to create a safe and supportive environment within the diabetes community to ensure that everyone feels comfortable seeking and offering support.

• It can have negative mental health consequences

Abusive behaviour can have a significant impact on mental health. For people with diabetes, who already have to manage the stress and anxiety that comes with living with a chronic condition, this can be especially harmful. Abuse can lead to feelings of shame, guilt, and worthlessness, which can exacerbate existing mental health issues or even lead to the development of new ones.

It’s crucial to prioritise mental health within the diabetes community, and that means not accepting abusive behaviour. People with diabetes need a supportive environment where they can feel safe discussing their struggles and seeking help when they need it. If abusive behaviour is present, it can make people feel even more isolated and alone, which can be detrimental to their mental health.

• It perpetuates harmful stereotypes

Unfortunately, there are still many harmful stereotypes and misconceptions about diabetes. Some people believe that diabetes is a result of poor lifestyle choices, and that people with diabetes are lazy, unmotivated, or lacking in willpower. These stereotypes are not only untrue, but they are also harmful and can contribute to the stigma that people with diabetes face.

When people within the diabetes community engage in abusive behaviour, they are perpetuating these harmful stereotypes. By shaming or bullying other diabetics, they are essentially saying that they believe these stereotypes are true, and that people who struggle with diabetes are somehow to blame for their condition. This can be incredibly damaging, both to the individual who is being targeted and to the community as a whole.

• It creates an unsafe environment

Abusive behaviour can create an unsafe environment within the diabetes community. People who are subjected to abuse may feel uncomfortable attending diabetes-related events or engaging with others in the community. They may feel that they are at risk of being targeted again, and that they have no recourse if that happens.

Creating a safe environment within the diabetes community means ensuring that everyone feels comfortable and supported. No one should feel as though they are at risk of being targeted or harassed. When abusive behaviour is present, it can undermine that sense of safety within the community.

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Sunday, November 13, 2022

Peers

The six characters from the TV show Friends are sitting and posing for the camera

I have many photos of my peers and those guys are a very photogenic bunch! and I consider them to be my friends, too. To use one of those photos might mean neglecting friends from other photos. Anyway! That's the long explanation of why I've chosen a photo from FRIENDS the TV show rather than one of my own. My diabetes friends are my peers, there is a very strong bond between many of us. I'll be there for yoooouuuu!

I took part in the Diabetes Chat 24hr chat bonanza! yesterday. I had an hour to talk to Jules from Enough Now DOC and GBDoc to talk about safety within the diabetes community, peer support and a little about mental health. I think the conversation flowed well, from hearing about unsavoury incidents and characters to how to stay safe online and in the general community, then how peer support has impacted and benefited many across the GBDoc community. Meeting and communicating with members of the community has certainly lifted my mental health when it comes to living with T1D and I think I'm right in saying that others have had a similar experience.

I have lost count of the number of people who I've met at the events & get togethers which I've attended. I mentioned in the Diabetes Chat; I've yet to have a poor experience from meeting my peers. Each time, there has been a new story, new information or a new face to meet. Sometimes, I've been able to directly help somebody. From the accessing of the tech that they need to some gentle words of encouragement and everything in between. I've been on the opposite side of that coin, too! Several diabetes tech gadgets have found their way into my lap, a direct result of meeting my peers. Those gadgets have undoubtedly helped me to maintain or improve aspects of my T1D management. 

Without peers, where would my T1D be? I suspect that I'd be using a Libre but, likely still injecting 8 to 10 times per day instead of using a pump (soon to be replaced with a brand new NHS funded one) and instead of using a CGM - a direct result of me tweeting about T1D and being recognised as somebody worthy of being gifted a device. Without peers, my burden would be much more than it is today. Diabetes aside, my private life would be far less rich as well. I have a WhatsApp which is heaving with messages and group messages from friends. No longer are they simply "peers" and no longer is the conversation driven by our lack of beta cells.

The Diabetes Chat event was littered with my friends and peers. After I'd had my hour with Jules, I just listened when time allowed. It was brilliant to see the names of online friends, joining in and telling their stories and offering their opinions. I was very pleased to see Alex take the hot seat to present the GBDoc Quiz and equally pleased that Mo agreed to lead the Tweetchat segment to assist Jules. Alex and Mo are frequent names in the Twitter GBDoc community but I don't remember hearing them speak very often, aside from the Zoom quizzes and when I interviewed Alex for a Dad Chats to... They're lovely people and, if they read this, I'd like to encourage both to push for more opportunities. The same goes for others within the diabetes community - You're just as important as the frequently heard voices, the voices with a social media presence and the voices who work within diabetes. Personally, I enjoy listening to the infrequently heard voice rather than a repeated narrative. 

Monday (tomorrow, after this blog is published) sees the publication of a new NHS document. "The Six Principles of Peer Support" appears to have been a long time in the 
coming. There is much chatter in my circles about what to expect. I'm certainly very interested in what the NHS will come up with following private discussions with a few who live with T1D. There is absolutely many positives to peer support and my hopes are high that the NHS will only enhance what is already there. 

Monday is also World Diabetes Day. Perhaps you'll mark the day, perhaps you won't. Your diabetes, your rules. Personally, I'm going to the pub for an afternoon with my friends. It just so happens they have diabetes, too!

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!


 

Wednesday, April 7, 2021

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!