Happy St. Paddy's Day, Diabetes Community!
While this is mostly an Americanized holiday, we wanted to offer you a glimpse into the real world of diabetes in Ireland -- with a personal testimonial from the country that so many of us are paying homage to in some form today.
We were excited to meet Gráinne Flynn at one of the MasterLab advocacy events a couple years ago. Turns out she's one of the guiding voices of the growing Irish Diabetes Online Community (DOC). In fact, in 2015 Gráinne helped create what's known as Thriveabetes, a first-of-its-kind annual one-day diabetes conference for the T1D community in that country. We think she's a perfect St. Paddy's Day addition to our Global Diabetes series here at the 'Mine.
We hope you enjoy some green fun today, and also take a moment to read what our Irish D-peep friend has to say:
Finding Diabetes Community in Ireland, by Gráinne Flynn
My journey to the Diabetes Online Community began about a decade ago, just before we established an Irish DOC here in Ireland.
This is a very small country with a total population of 4.5 million people (this doesn’t include Northern Ireland, just the 26 counties in the republic). We don't have a diabetes register, but it's estimated that there are roughly 200,000 people living with diabetes in Ireland.
You would think, being a small country, that it would be easy to find other people with diabetes. But as many of you know, sometimes, diabetes just doesn't come up in conversation and therefore you never know that the person you just met is living with diabetes too.
I had lived in the U.S. from 2002 to 2005, but was back in Ireland in 2007, and there were no Irish diabetes blogs or social media groups here. Ireland had – and still only has -- one registered national charity to represent all of us in this country (Diabetes Ireland). As you can imagine, this national charity struggled to do everything for everybody with diabetes with extremely limited funding. A social media platform to reach out to the diabetes community was too big of a stretch on those resources at that time.
So, I felt alone.
I had been living with type 1 diabetes for 13 years in 2007. I had just moved to a new town in my old country. I was struggling with my diabetes -- my HbA1C was climbing, I was burning out and was not coping very well being a mom to a toddler and a 4-year-old in a town where I didn’t know anyone. It was the first time in my life I actual felt completely isolated. I knew I need to connect with other people with type 1 diabetes.
I bookmarked every diabetes blog or website written by PWDs (people with diabetes), subscribed, followed and liked all that encompassed the emerging diabetes online community.
With the help of the newly formed Clare branch of Diabetes Ireland, myself and another member set about figuring out how to get the diabetes peer support that we needed. I did this by becoming part of the branch and our local support group was up and running by the end of 2007.
I was still trying to find ways to reach out to as many people with diabetes in Ireland as possible and began using online forums and google searches. After all, having diabetes meetings was all well and good but if people didn’t know about them, how would they know to come? Then…
In 2008, Niamh Downes, a newly diagnosed adult with type 1 diabetes, also went looking for other people with diabetes online. She set up a private Facebook group and it took off. I came across the group in one of my repetitive Google searches.
By 2010, there were a couple of hundred members in the group with a large population living in, or working in, Dublin City (the capital of Ireland). It was only a matter of time before someone would suggest a real life meet-up.
I wasn’t going to be any help in setting up the meeting as I lived on the opposite side of the country. But I did remember seeing another post on a different online forum suggesting the same idea and dug it out. This post came from Emma O’Toole (then Battigan). I put the two women in touch with each other. They met up at the end of 2010 and with the help of Diabetes Ireland, set up the Adults Type 1 Diabetic Dublin Support Group in February 2011, with a coexisting Facebook group set up later.
It stared with about 20 people, all nervous and overwhelmed about being in the same room. Today, there are 1,600 members in the “Diabetes in Ireland” Facebook group -- it includes people with all types of diabetes, friends and family members. There are 1,200 members on the Irish parents group and numerous other Irish groups that are regional. It's a regular “whatever you need to know about diabetes” go-to group.
I was truly thankful for our well-established Irish DOC in 2013, when I found myself at the bottom of a barrel, desperately trying to get out, with my diabetes management. My DOC had no idea that they kept me going and helped me find my way back. That’s the great thing about an online community, you still feel connected even if you are not participating, or if you are only reading the posts. I was still at a point where I couldn’t talk about what was going on with me and it didn’t matter. The DOC was there 24/7 for me.
The growth of the Irish DOC, has given Diabetes Ireland a direct line to communicate with the community. It means that they are no longer just people in a regional office far, far away, reaching only people in those local areas. They can now engage with a much bigger representation of the diabetes community, allowing them to serve us better. Their engagement with social media has offered our community an insight into just how much they work for us.
The growth of the Irish DOC has also been responsible for making the Thriveabetes conferences happen and people who are newly diagnosed aren't spending as much time in the isolating world of not knowing anyone else with diabetes; they're finding the DOC sooner that I did.
In 10 short years, we've grown from no presence to almost 10,000 members on Diabetes Ireland’s Facebook page. I do know that most of the diabetes community in Ireland still doesn’t realize that the Irish DOC exists nor are they aware of the many benefits it offers. But we are here, we are increasingly loud, and I am certainly very proud to be a part of it.
All of this has opened up so many doors, including attending the Diabetes Hands Foundation's MasterLab event in 2015. It taught me so much about advocating and raising diabetes awareness in my community. I met so many diabetes bloggers, who gave me the courage to put myself out there and start telling people, “I write a blog."
It's been an amazing journey so far, and I am so happy to be a part of the DOC -- here in Ireland, and worldwide!
Thanks for sharing your story, Gráinne!
Readers: you can hear more from Gráinne at her cleverly named blog, Blood Sugar Trampoline.