11 Ways to Connect with People with Diabetes Online
By Kara Miecznikowski
Diabetes can be an isolating experience, but it doesn’t have to be. Even if you can’t connect with people in person, there are many ways to find community online. Learn about how to meet others virtually from forums to blogs to social media.
For many people, peer support is an integral part of managing their diabetes. Even long before the COVID-19 pandemic, those with diabetes have found support in an online space often referred to as the “Diabetes Online Community'' (DOC). The DOC exists across many platforms, including community forums, blogs, and social media.
The DOC offers many of the same benefits of an in-person support group – both offer a chance to find community and connect with others, and they provide the opportunity to crowdsource ideas for new recipes, exercise strategies, and everyday diabetes management. These are also spaces for people with diabetes to find motivation and inspiration from each other.
Importantly, connecting with the DOC can be a significant way to combat diabetes stigma in your own life and the community. Sharing stories can be an effective tool for fighting stigma by normalizing the experiences of people with diabetes and helping them feel less alone, counteracting feelings of judgement and isolation. The DOC can decrease diabetes stigma by empowering its members and humanizing their experiences.
Because it is an international online community, the DOC offers a vast array of perspectives across many geographical areas and cultures; beyond the opportunity to be a member of the global diabetes community, you may be able to more easily find advice for a particular question or experience simply because the DOC is so large and diverse.
How to get connected to the diabetes online community
Forums
Forums are a great space for asking questions, sharing advice, and connecting with others who can relate to your experience. When it comes to conversation, you can choose to be involved a little or a lot – some people may post on forums regularly, while others simply choose to read peer conversation on the forum topics that interest them. Most forums have a search feature that allows you to look up specific keywords, which can be helpful for finding information related to a specific question or concern you might have.
Diabetes Daily, founded in 2005, hosts a collection of forums for people with type 1 and type 2 diabetes to ask questions, share recipes, post encouraging stories, and more. Discussion topics range from diabetes technology to the representation of people with diabetes in TV shows and movies.
Beyond Type 1 Community is an online community that allows those with type 1 to get connected to others who understand the nuances of life with diabetes. You can ask questions, share successes, and vent about your diabetes in a safe and respectful platform designed specifically for people with type 1.
Beyond Type 2 Community is very similar to the Beyond Type 1 community and was created in a partnership between Beyond Type 1 and the American Diabetes Association. However this is a space for people specifically with type 2 to connect with others about everything related to the daily management of their condition. The community is also available in spanish.
Smart Patients is an online peer-to-peer support group for people affected by a variety of health conditions, including type 1 and type 2 diabetes. The forum focuses on helping peers learn from one another and become more knowledgeable about their condition. Discussion topics cover everything from medication questions to diet and exercise advice, and there are also specific forums for care partners and family members.
Forums are ideal for engaging with the online diabetes community in an interactive (and usually anonymous) way and are conducive to conversations that move at a more measured pace than those on social media sites (think emailing versus texting). It’s important to keep in mind that recommendations from peers shouldn’t replace professional healthcare advice – always talk to your healthcare provider before making changes to how you manage your diabetes. People experience and manage their diabetes in different ways, so strategies that work for others may not work as well for you.
Blogs
Blogs are another important part of the diabetes online community. These are great for discovering new foods and recipes, hearing inspiring stories, and seeing your own experience reflected in another person’s challenges and triumphs. There are numerous online blogs written by people with diabetes – here are a few of our favorites.
Diabetes Stories is a blog written by Riva Greenberg, who founded the site in 2007. She was diagnosed with type 1 diabetes at 18 years old and created the blog in hopes of helping people with diabetes and their healthcare teams. The blog covers everything from current diabetes research and technology updates to personal anecdotes and reflections.
Diagnosed Not Defeated was founded by Phyllisa Deroze in 2011 after she was diagnosed with type 2 diabetes. In 2019, she was diagnosed with LADA, (latent autoimmune diabetes in adults), and today she is a global diabetes patient advocate, professor of English Literature, and director of research at dQ&A. Her blog aims to help her connect with and educate others about both types of diabetes. Deroze is also involved with the DOC on Instagram and Twitter.
“As a person who was misdiagnosed with type 2 diabetes for eight years, I've benefited from moving between type 2 and type 1 spaces online,” said Deroze. “Joining the DOC has helped me connect with others and feel less alone.”
Diabetes Dad, founded in 2012, is a blog for parents of children with diabetes (CWD). Written by Tom Karlya, who has two children with type 1 diabetes, the blog’s mission is to help educate and inspire the members of the CWD community.
Scott’s Diabetes is a blog written by Scott Johnson, a speaker, writer, and advocate who has been living with type 1 diabetes for over 40 years and has been blogging about life with diabetes since 2004. Scott is an outspoken member of the DOC, which he says has been an important source of support and has helped him find a sense of normalcy in living with diabetes.
“After a long time with diabetes, I still struggle with many aspects of my management,” said Johnson. “Before being active in the DOC, I often asked myself why I couldn't ‘get it right’ or ‘figure it out?’ But once I started to connect with others in the DOC, I quickly saw that many people struggle with similar issues. I recognized that diabetes can be difficult and that it is normal to struggle from time to time. Finding that sense of normalcy helps me keep going when I get frustrated.”
Hangry Woman was founded by Mila Clarke Buckley after she was diagnosed with type 2 diabetes – a misdiagnosis that, like Deroze, turned out to be LADA. Mila shares recipes and lived experiences on her blog, through which she hopes to show others that life with diabetes can be joyful and healthy.
Blogs are inherently less interactive than forums or social media sites, where the conversation is usually centered around live discussion. Because the blogger picks the topics they write about, not everything on the blog may be of interest (or of relevance) to you. However, blogs can be a wonderful place to find inspiration in peers’ personal stories and reflections.
Social media
Social media sites are perhaps the most popular place to connect with others in the DOC. Facebook and Twitter both have a significant DOC presence; Facebook hosts a variety of diabetes “groups” in which members can post and comment on others’ posts, while the diabetes community on Twitter is more diffuse and organized by individual accounts and hashtags.
diaTribe community dialogue is a Facebook group for people with diabetes to ask questions, share advice, and read up on current diabetes research and technology news. Other Facebook groups include Children with Diabetes and Diabetes Strong Community.
Twitter is another space for members of the DOC to come together. You can get involved by following individual accounts, such as the American Diabetes Association (@AmDiabetesAssn), Beyond Type 1 (@BeyondType1), and Beyond Type 2 (@BeyondType2), DiabetesMine (@DiabetesMine) or by searching hashtags, such as “#doc,” “#t1d,” and “#t2d.”
You can search “#dsma” to view and/or join tweetchats held every Wednesday at 9 PM ET by Diabetes Social Media Advocacy, an online advocacy group that facilitates peer support between individuals with diabetes. Similarly, use #gbdoc to join the Great Britain Diabetes online community for a diabetes Q&A chat that takes place every Wednesday at 4 PM ET.
“Only in the DOC can I post a message at 1:00 a.m. about recovering from a hypo and someone else will say – me too,” said Deroze.
Social media is a fast and easy way to connect with the DOC, especially if you already have social media accounts. These platforms are less asynchronous than forums or blogs, as conversations tend to happen more quickly and frequently here. Because your engagement with these sites is usually linked to a personal account with your name, photo, etc., keep in mind that your interactions are not anonymous unless your account is. This is particularly important when posting and commenting if you prefer to stay unidentified for privacy reasons.
As always, consider talking to your healthcare team about joining the DOC – they may have suggestions, or be able to direct you to DOC spaces that best fit your needs.
“I love that there are so many ways to connect – Instagram, Twitter, TikTok, YouTube, and more. There's something out there for everyone,” said Johnson. “Finding people that you can relate to can go a long way in how you feel about your own diabetes. You might even be inspired to share your own story, and the more the merrier! Chances are that someone out there needs to hear what you have to say.”
