Forum: 10 Years on - How it all began!

[Northerner]

I missed the launch day of the forum - by one day! I learned about it from my copy of Balance which arrived on 15th November and signed up that day It came at a very good time from my perspective, because it was only about 5 months after my diagnosis. As a user of forums in the past (and Moderator on one or two) I had been looking for something that would help provide some of the answers about living with diabetes from people who were actually experiencing it. Soon after diagnosis I had found a few online forums, but the majority were US-based and held little information or discussion about the healthcare and treatment options here in the UK, so I didn't participate much, but when our forum started it seemed ideal

Because I've been here so long a lot of people assume that I must have started the forum, but that's not the case. A lady who had been diagnosed since early childhood actually got the ball rolling because despite over 30 years of Type 1 diabetes she had never met another. Like me, she had found the available US-based forums to be not as useful as they might be, so approached Diabetes UK with the idea that they would help her launch a UK-based one. This initial approach was made, I believe, around two years before the forum actually launched as there was a lot of work done to select the appropriate software platform, establish the format and design, and testing to make sure everything functioned well.

As you may imagine, posts and members were a bit thin on the ground to begin with. There were a couple of people who had heard about the forum on the grapevine who joined prior to the actual launch date - @ukjohn is our longest serving 'active' member, and he joined on October 29th 2008! @PhoebeC joined just before the launch on November 12th 2008, and I'm the next longest-serving member who is still posting now @Hazel joined on Novermber 17th, and @grovesy joined the same day! @Copepod, our much-missed Moderator joined on November 19th. In fact, quite afew of the members who have contributed so much to the forum over the years were very 'early adopters'

The Forum initially had fewer sections, and in the early days it was possible to go half a day or more without a new post to read. This gradually began to build to a couple of dozen a day, and by the end of 2008 the founder asked me, Copepod and two other regular contributors if we would like to help with the moderation of posts and day-to-day management of the forum. Even with a relatively 'quiet' forum, there is still quite a bit to be done. Things started to become much busier at the start of 2009, and by July we were receiving around 400-500 new posts each day!

An early forum promotional poster


It was at this time that the original founder asked me if I would stand in as Forum Administrator as she was expecting a baby, and I agreed. I've been in the role ever since! Hence my 90,000+ posts

Things never really slowed down for the next few years, as we became very busy with new members, and large numbers of posts from people from a multitude of backgrounds, age ranges and experiences with diabetes. At one time we were actually the busiest Diabetes Support Forum on the planet in terms of daily posts, and we have always had one of the highest levels of engagement, with an average of 50 posts per member - other forums may have many more members, but here, it seems, more people wish to participate more often

That's how it all began, and now, 10 years on, it has shown its worth time and time again. The friendliness of the members, their knowledge and experience freely-shared has helped countless people to overcome their initial fears and confusion at diagnosis, find solidarity and solutions to problems in common, and the opportunity to just 'talk diabetes' with people who really 'get it'



If you'd like to read about the highlights from our first year, I wrote a Review of 2009 - even if you've only been here a short time I'm sure you will recognise many of the topics discussed!

https://diabetespoetry.blogspot.com/2009/12/diabetes-support-review-of-year-2009.html

https://diabetespoetry.blogspot.com/2009/12/diabetes-support-review-of-year-2009_29.html

https://diabetespoetry.blogspot.com/2009/12/diabetes-support-review-of-year-2009_30.html

Look out for more posts celebrating the forum as our 10th anniversary (Diaversary? ) approaches If you'd like to post your own memories and reflections, please prefix your thread title with 'Forum: 10 Years on - ' so others can quickly identify them

 

[grovesy]

I think I saw it advertised in Balance too.

 

[eggyg]

I joined November 2010, just one month after diagnosis. I was looking for someone like me, a diabetic because of pancreatic surgery, even my GP hadn’t known anyone like me. I found the forum by Googling. Posted and waited. I got a reply from a guy called Martin and a woman called Twinny. Martin had had a total pancreatectomy and I think Twinny had had a partial like me. I will admit I cried, I felt so lonely at the time and was totally and utterly clueless. Here I am 8 years later, infact it’s my diaversary today funnily enough. I have learnt so much and it’s given me the confidence to challenge the medics, was diagnosed type 2 initially and put on Metformin and told to eat lots of pasta! It beggars belief now, because of the help and advise I have received I have been re diagnosed as Type 1, really to enable me to access the services I need. Been on a DAFNE course and learnt to carb count. I am now not the only Creonista in the village! But best of all I have been to quite a few meets in Glasgow and Newcastle and met loads of lovely people. Thank you from the bottom of my heart.

 

[sofaraway]

Can’t remember when exactly I joined but fairly early on.
Not posted for years, but still browse sometimes.

 

[Northerner]

Can’t remember when exactly I joined but fairly early on.
Not posted for years, but still browse sometimes.

Ah! Great to hear from you @sofaraway! You joined on 17th November 2008 and were the first person to reach 500 posts, as I recall! Lots of really helpful information about MODY too, and sterling work as one of the original 4 Moderators! Hope all is well with you

 

[Northerner]

I joined November 2010, just one month after diagnosis. I was looking for someone like me, a diabetic because of pancreatic surgery, even my GP hadn’t known anyone like me. I found the forum by Googling. Posted and waited. I got a reply from a guy called Martin and a woman called Twinny. Martin had had a total pancreatectomy and I think Twinny had had a partial like me. I will admit I cried, I felt so lonely at the time and was totally and utterly clueless. Here I am 8 years later, infact it’s my diaversary today funnily enough. I have learnt so much and it’s given me the confidence to challenge the medics, was diagnosed type 2 initially and put on Metformin and told to eat lots of pasta! It beggars belief now, because of the help and advise I have received I have been re diagnosed as Type 1, really to enable me to access the services I need. Been on a DAFNE course and learnt to carb count. I am now not the only Creonista in the village! But best of all I have been to quite a few meets in Glasgow and Newcastle and met loads of lovely people. Thank you from the bottom of my heart.

Happy Diaversary! I have met Twinnie at a Forum Meet in Glasgow and am still in touch with her Glad to hear the forum helped you, you've been a great help to others since

 

[trophywench]

I joined in March 2009 - but frankly found there was not anything on it and not enough contribution from other T1s to give me the confidence to ask what the hell was going on with my BG, being totally out of control at that time. I found a different UK forum - which did have excellent input from a few folk so I asked, once I'd joined and commented on a few things and felt comfortable enough. Well - who the hell knew stress affected your BG? - well I didn't, not having had it to any extent prior to then.

Anyway so though I was a member, I stuck more closely to the other forum in an effort to repay the help I'd been given. It's gone a lot quieter over there in recent times - and this one has grown more than commensurately because of course, it being a DUK initiative rather than some random diabetics (including that Aussie bloke, Alan Shanley) trying to help others.

If only the British Diabetic Association had known the word 'pro-active' in 1972! LOL

 

[everydayupsanddowns]

I’m not sure when I joined. 2010ish I think.

 

[Eddy Edson]

Kudos to everybody involved in building it up. It really is one of the best on-line communities I've encountered. And technically, the site design & user experience are excellent.

 

[Carolg]

I missed the launch day of the forum - by one day! I learned about it from my copy of Balance which arrived on 15th November and signed up that day It came at a very good time from my perspective, because it was only about 5 months after my diagnosis. As a user of forums in the past (and Moderator on one or two) I had been looking for something that would help provide some of the answers about living with diabetes from people who were actually experiencing it. Soon after diagnosis I had found a few online forums, but the majority were US-based and held little information or discussion about the healthcare and treatment options here in the UK, so I didn't participate much, but when our forum started it seemed ideal

Because I've been here so long a lot of people assume that I must have started the forum, but that's not the case. A lady who had been diagnosed since early childhood actually got the ball rolling because despite over 30 years of Type 1 diabetes she had never met another. Like me, she had found the available US-based forums to be not as useful as they might be, so approached Diabetes UK with the idea that they would help her launch a UK-based one. This initial approach was made, I believe, around two years before the forum actually launched as there was a lot of work done to select the appropriate software platform, establish the format and design, and testing to make sure everything functioned well.

As you may imagine, posts and members were a bit thin on the ground to begin with. There were a couple of people who had heard about the forum on the grapevine who joined prior to the actual launch date - @ukjohn is our longest serving 'active' member, and he joined on October 29th 2008! @PhoebeC joined just before the launch on November 12th 2008, and I'm the next longest-serving member who is still posting now @Hazel joined on Novermber 17th, and @grovesy joined the same day! @Copepod, our much-missed Moderator joined on November 19th. In fact, quite afew of the members who have contributed so much to the forum over the years were very 'early adopters'

The Forum initially had fewer sections, and in the early days it was possible to go half a day or more without a new post to read. This gradually began to build to a couple of dozen a day, and by the end of 2008 the founder asked me, Copepod and two other regular contributors if we would like to help with the moderation of posts and day-to-day management of the forum. Even with a relatively 'quiet' forum, there is still quite a bit to be done. Things started to become much busier at the start of 2009, and by July we were receiving around 400-500 new posts each day!

An early forum promotional poster
View attachment 10063

It was at this time that the original founder asked me if I would stand in as Forum Administrator as she was expecting a baby, and I agreed. I've been in the role ever since! Hence my 90,000+ posts

Things never really slowed down for the next few years, as we became very busy with new members, and large numbers of posts from people from a multitude of backgrounds, age ranges and experiences with diabetes. At one time we were actually the busiest Diabetes Support Forum on the planet in terms of daily posts, and we have always had one of the highest levels of engagement, with an average of 50 posts per member - other forums may have many more members, but here, it seems, more people wish to participate more often

That's how it all began, and now, 10 years on, it has shown its worth time and time again. The friendliness of the members, their knowledge and experience freely-shared has helped countless people to overcome their initial fears and confusion at diagnosis, find solidarity and solutions to problems in common, and the opportunity to just 'talk diabetes' with people who really 'get it'

View attachment 10064

If you'd like to read about the highlights from our first year, I wrote a Review of 2009 - even if you've only been here a short time I'm sure you will recognise many of the topics discussed!

https://diabetespoetry.blogspot.com/2009/12/diabetes-support-review-of-year-2009.html

https://diabetespoetry.blogspot.com/2009/12/diabetes-support-review-of-year-2009_29.html

https://diabetespoetry.blogspot.com/2009/12/diabetes-support-review-of-year-2009_30.html

Look out for more posts celebrating the forum as our 10th anniversary (Diaversary? ) approaches If you'd like to post your own memories and reflections, please prefix your thread title with 'Forum: 10 Years on - ' so others can quickly identify them

Thanks for the history Northerner. I joined a couple of months after diagnosis in 2015, and yours and others welcome and information certainly made me feel less alone. Thanks everyone over the years

 

[Carolg]

I joined November 2010, just one month after diagnosis. I was looking for someone like me, a diabetic because of pancreatic surgery, even my GP hadn’t known anyone like me. I found the forum by Googling. Posted and waited. I got a reply from a guy called Martin and a woman called Twinny. Martin had had a total pancreatectomy and I think Twinny had had a partial like me. I will admit I cried, I felt so lonely at the time and was totally and utterly clueless. Here I am 8 years later, infact it’s my diaversary today funnily enough. I have learnt so much and it’s given me the confidence to challenge the medics, was diagnosed type 2 initially and put on Metformin and told to eat lots of pasta! It beggars belief now, because of the help and advise I have received I have been re diagnosed as Type 1, really to enable me to access the services I need. Been on a DAFNE course and learnt to carb count. I am now not the only Creonista in the village! But best of all I have been to quite a few meets in Glasgow and Newcastle and met loads of lovely people. Thank you from the bottom of my heart.

You have been a star eggyg, and lovely meetings. Have to get another one organised

 

[Carolg]

I joined November 2010, just one month after diagnosis. I was looking for someone like me, a diabetic because of pancreatic surgery, even my GP hadn’t known anyone like me. I found the forum by Googling. Posted and waited. I got a reply from a guy called Martin and a woman called Twinny. Martin had had a total pancreatectomy and I think Twinny had had a partial like me. I will admit I cried, I felt so lonely at the time and was totally and utterly clueless. Here I am 8 years later, infact it’s my diaversary today funnily enough. I have learnt so much and it’s given me the confidence to challenge the medics, was diagnosed type 2 initially and put on Metformin and told to eat lots of pasta! It beggars belief now, because of the help and advise I have received I have been re diagnosed as Type 1, really to enable me to access the services I need. Been on a DAFNE course and learnt to carb count. I am now not the only Creonista in the village! But best of all I have been to quite a few meets in Glasgow and Newcastle and met loads of lovely people. Thank you from the bottom of my heart.

Happy belated diaversary elaine

 

[mikeyB]

I honestly can’t remember when I joined, but I haven’t half had some fun, and learned a lot.

 

[Carolg]

I honestly can’t remember when I joined, but I haven’t half had some fun, and learned a lot.

And helped others a lot as well mikeyb

 

[Bloden]

How interesting to get the history of the forum.

It seems I joined almost exactly five years ago. I was living (and struggling!) in Spain and was furious with my GP there for refusing to refer me on for emotional support...thankfully, I found this forum...the rest is history. THANK YOU to ev1 - especially you, Northie - for helping me learn to look after myself better.

 

[grainger]

I joined almost 7 years ago I think the same day I was diagnosed or the day after. This forum has been so amazing for me and you lot have seen me through two pregnancies so I can’t thank it enough!

All the moderators and regular contributors do such a fantastic job! Thank you x

 

[PhoebeC]

I joined almost 7 years ago I think the same day I was diagnosed or the day after. This forum has been so amazing for me and you lot have seen me through two pregnancies so I can’t thank it enough!

All the moderators and regular contributors do such a fantastic job! Thank you x

Wow I didn't know it was that long ago! I had a few years floating about on my own, and then I found this goldmine of love and support and help. I don't know how I found it I had tried another which I didn't like, and books all american based, all on pumps and or outdated, or receipe books just type 2, so I really was on my own. At that stage in my still teenage years I didn't even know another person with a chronic illness or open about their mental health battles. Totally marooned.

Again on the pregnancy thing I couldn't have got through it without you all.

This brings me to tears typing this, because literally life and sanity savers so many times. You helped me survive that hardest part of my life, when I didn't think I or my baby could survive it.

As did @Northerners first post above.

I liked the old colour shemce and the lips logo, so I wasn't that happy when Diabetes UK re-branded ha! But it is so much better than it was.

Thanks all, its you who make it!

 

[Flower]

I joined in August 2013 after loitering around for a while thinking shall I, shan't I? I kept reading posts and thinking what a friendly, kind, supportive, informed bunch you were and almost felt that I would be intruding. I'm so glad I did say 'Hello' eventually.

I so badly needed to talk to others who knew about diabetes, I'd hardly met anyone else apart from sitting in hospital clinics and wards. My head was full up with having to deal with the most terrifying things but there just wan't any type of psychological help ever offered. I'd lived through losing my sight and had lived without sight for a year trapped inside my own head and after getting a bit of sight back I was desperate to talk to others who were dealing with similar struggles.

This forum has saved me completely. Before joining I just didn't ever speak or talk about diabetes, I was ashamed of the mess I'd made. I can't thank you enough for the kindness and the amazing support you've shown me. Posts have made me cry, laugh, nod and think I know just what you mean and I feel at home on here.

Thank you to Northerner, the moderators and everyone who contributes to make it the place it is.

 

[Matt Cycle]

Interesting beginnings Northie. I'm a relative newcomer to the forum and had disengaged from organised diabetes things, not that you could be engaged as there wasn't a lot to do other than BDA meetings - I haven't been a member of the BDA for over 20 years having become disillusioned with what it offered me as a Type 1. I still managed my diabetes, attended my appointments and just plodded on in my own way. Around 3.5 years ago I was researching CGM's and a site came up with a forum. I'd been on a couple of cycling forums and a football one without posting much but decided to join it. After a bemusing but somewhat unpleasant experience on there (guess which one I'm talking about ) I left it and was about to stay away from diabetes forums for good when I came across this one and have been here ever since. Pleasantly surprised by the number of T1's and thought I may be able to offer something? (Still not sure about that!)

Being on the forum and meeting people from here has helped in many ways. I'd always managed my T1 as best I could but always kept it 'hidden' - I didn't like talking about it and tended not to shout about it and although I'm still not and never will be a 100% look at me I'm a diabetic type I'm much more open about it now and more willing to tell people I've got Type 1, what it is, what it's not etc. Rather than accepting the status quo I've also become more proactive in managing it. Thanks to Northie whose was the first (and friendly) response I received and to everyone else since for making it what it is.

 

[Pine Marten]

I can't remember exactly when I joined either, but this place has meant so much - information, support, encouragement, fun, enlightenment! I so wish I had found it when I was first diagnosed as I muddled through with little support and less knowledge, but hey ho, that's life. It is enormously valuable and I don't know what I'd do without all you lovely people so many, many thanks!