Type 1 diabetes is a life-long condition that causes the level of glucose in a person’s blood to be too high. It is caused by the body’s immune system attacking the cells in the pancreas that produce insulin, the hormone that allows the body to use glucose as energy. It cannot be cured, and people with diabetes need to inject or infuse insulin multiple times a day to control their blood sugar levels. Peer support communities can help people with type 1 diabetes to manage their condition safely and feel less isolated.
In this blog, Paul Sandells, a diabetes peer supporter and advocate, talks about the important role of peer support in helping people with type 1 diabetes improve their blood glucose control and deal with the burden that diabetes can place on daily life.
A diagnosis of any type of diabetes can be a frightening and lonely experience at any age. You may have read stories about others living with diabetes or heard of “a friend of a friend” who had the condition. Those tales may not have been lavished in positives and, if you’ve been recently diagnosed, may even have had a negative impact upon you.
At the time of my own diagnosis with type 1 diabetes, there was little in the way of peer support. That was a long time ago, in 1984. I remember talk of diabetes “camps” but, quite frankly, at the tender age of eight the prospect terrified me and I just wanted to feel like every child—every other child who didn’t have diabetes, at least. Without peers to talk to, I spent the rest of my childhood getting support from healthcare professionals. In the 1980s and 1990s, that support was primarily based around monitoring my HbA1c and keeping my blood glucose as low as possible. It was a lonely and confusing time and eventually, as I hit my teens and as many teens do, I rebelled. Adulthood, employment, marriage and children followed, but it wasn’t until my 40th birthday that I really began to accept that I have diabetes.
I did some internet searching around the subject of complications and stumbled upon several communities of people living with type 1 diabetes. That was a turning point in my life with diabetes. If all of those strangers were talking about their day-to-day worries—their data, their good days, their highs and lows, how to bolus for pizza?—then I should too. What’s the worst that could happen? The internet is still pretty anonymous and I could always hide behind a moniker. The moniker which I settled on was DiabeticDad; I figured that described me very well.
Within a few days of exchanging messages on a forum, I’d launched my own YouTube channel and began creating videos about my diabetes. I don’t mind admitting that I was terrified and that my videos were amateur but, remarkably, people began to subscribe to my channel and engage with me. One subscriber mentioned social media, specifically Twitter, a platform which I was already familiar with. I created @DiabeticDadUK and began tweeting. Within 24 hours, I had 100 people living with or with an interest in diabetes following me. The friendliness and immediate support was obvious. That was five years ago, and since that time, I have been given immeasurable levels of help and support from my peers within the Twitter community of #GBDoc (Great Britain Diabetes Online Community) and beyond.
My peers helped me to realise that I’m not alone, that they’d been through the same struggles as me, that life can be absolutely fine with diabetes. I’ve attended many “meet up” events with my peers, many of whom I am very proud to call my friends. Those events helped me to open up and talk about my diabetes, to share my stories and my lived experience. I’ve since attended many conferences in person and virtually, and even spoken at some.
Along the way, my peer support network has grown to such an extent that I feel I can reach out to any number of my friends for help or an answer to a question and they’ll be there. The support and information I’ve gained over the years has helped others, too. I am now a GBDoc community volunteer. That means I help to organise events, “signpost” the community to good things happening within the world of diabetes, help to support the fun things which our community runs such as monthly Zoom quizzes and Fantasy Football competitions and, more recently, offer one to one support as a mentor.
My social media accounts and blog document all the important things that happen to me and my diabetes because I’m a great believer in sharing “warts an’ all” to help to normalise the condition for those living with it. I think it’s also helpful for the general public who may be confused by what diabetes is, not understand what the different types are, and might believe the myths and misinformation that are out there. I want to provide a voice to de-stigmatise diabetes in all its types.
Peer support has dramatically changed my long-term outlook with diabetes. I have embraced technology and moved from finger pricking and injections to the use of a continuous glucose monitor and an insulin pump. Both of those transitions came about through engagement with my peers. The result was a much lower HbA1c but, more importantly for me, a greater quality of life with far less burden. It has been an absolute pleasure to share that journey with the community and hear of others experiencing similar improvements. Tales of peer support helping the lives of people living with Diabetes are cropping up all the time, rarely does a day go by without me witnessing a person thanking another for their help - help which might take some time to obtain through NHS professionals.
Peer support comes in many forms, from the very light-hearted chats to the most serious discussion, it only needs somebody to start the conversation. So, drop by and say hello and use the hashtag of #GBDoc. You’re almost certain to find help and friendship from people who live with Diabetes. You are not alone.
Read more from Paul on his blog about living with diabetes. He also tweets as @DiabeticDadUK
About the Author
Paul is a community volunteer for GBDoc, a diabetes community on Twitter. He has lived with type 1 diabetes since 1984 and blogs, vlogs and podcasts about the condition, as well as speaking publicly about various aspects of diabetes.
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