With 25,000 visits a month and 13,000 members theDiabetes UK Support forum, which is celebrating its 6th birthday, is stronger and more diverse than ever before. On its anniversary we spoke to some of its members to tell their story and heard about what makes it so special….
A welcoming and secure community
Alan Eastwood, 56, who lives in Southampton, is the forum’s moderator. Alan was diagnosed with Type 1 diabetes in June 2008 and found the forum quite soon afterwards. Not long after he joined he was asked to become the forum’s administrator.
He said: “It’s my job as Admin to provide a welcoming and secure community where people can feel free to discuss their experiences, worries and problems in a supportive and friendly atmosphere,” explains Alan, who comes from a background in IT.
“It’s the most remarkable job I’ve ever done. I’ve seen so many people turn their lives around, whether they are newly diagnosed or have had diabetes for 20 or 30 years. A lot of people who engage on the forum don’t know a single other person with diabetes so it’s a revelation for them when they can chat to other people who are going through or have been through the same things as them.”
Help with understanding diabetes
Alan says in his experience people can struggle to cope with their condition as they face conflicting advice from family, friends and even well-meaning strangers. “That’s what is so brilliant about the forum. You can speak to lots of informed people who can help you understand the complexities of diabetes. I’d say we have about a 50/50 split between people with Type 1 and Type 2 diabetes so there really is someone out there who knows what you are going through.”
"We want people to feel at home"
The design of the forum is simple. “It’s designed to be as inclusive as possible,” says Alan. “We want people to mix and feel at home on the site. The great thing is you always keep learning – diabetes is like that, there’s always things changing in terms of technology and medication.”
Alan says the forum is completely different from going to a meeting. “This is informal. It’s a wonderful mix of immediacy and detachment as you often get immediate feedback and I think people feel freer to express themselves online."
Of course people do form friendships and there have been several meet-ups over the years. “I’ve met hundreds of people from the forum over the years,” says Alan. “Without exception they are lovely, approachable and friendly people.”
Rebekah Humphrey-Bullen, 31, who lives in Bognor Regis, joined the forum over a year ago. “The only other person I’d ever met with Type 1 had it from when she was a baby so she’d never known any different, whereas I was diagnosed at 18. I run my own business and do sometimes get stressed, so it’s been brilliant to get tips about controlling my blood glucose levels from others on the forum. I’m on it daily.
“I really like that people with Type 1 and Type 2 post in the same discussions. I thought the two conditions were completely different but actually if you are Type 2 and injecting insulin there are lots of similarities.“When I first joined the forum I went on to get help and support but now I’m the one giving it. It’s definitely made me more confident in my understanding of my diabetes. Funnily enough, it’s made me more inclined to figure things out for myself.”
Hannah, 32, from Hertfordshire, says the forum was a great place to hear from other women who had Type 1 diabetes and had had children.
“Finding other people who had been pregnant and were able to tell me about their experiences was great. The general vibe of the site is supportive, open and frank. You are able to have a difference of opinion without getting criticised for it.”
Steph Parmee, 44, from Bury St Edmunds, says the forum has been invaluable as she coped with a misdiagnosis.
“I was diagnosed with Type 2 diabetes after a routine health check but even though I radically changed my diet and my medication my blood sugar was still going up and up. It was the forum that empowered me to keep going back to my GP and say something wasn’t right. I didn’t want to complain and be pushy, but I do think I’d have ended up in a much worse state if my forum friends hadn’t pushed me to keep trying to get some answers.
“Now I try to give others on the forum the same support they gave me.”
And here’s just a small sample of what forum members have been posting about their experience on the forum:
“When I was first diagnosed, I was confused, ill and frightened. I found this place after only a couple of days and haven't looked back. I've learned so much from the folk in here, found a wonderful support network and made some great friends. What more could you ask of a forum?”
“The forum was here for my first hypo, at work, where in my befuddled and panicky state I was unsure when to re-test etc. I got reassuring advice that calmed me down immediately. This place is the first place I think of when I have a query, or need help. I look forward to hearing everyone's news and progress and enjoy all the stuff not necessarily related to the D as well, it lifts my day. I am sure we all imagine what life would be like if a magic wand was waved and we could choose to not have diabetes anymore. I for one, would pause and think of this place and how I would miss you all!”
“No matter how resourceful I am in finding out what I need to know, there is no substitute for people travelling a similar path.”
“I live alone in a remote area of Spain and am isolated in every sense of the word. When I was ill so many people helped me through it, when I was ill-informed so many people explained the problem - and the solution. Thanks everyone.”