Living with diabetes requires sooooo much effort. The daily requirements of staying alive are relentless and unending. It is messy, unpredictable, and damn frustrating most of the time. The biggest thing though, is that unless you have a friend or community who also has it, you are likely to feel misunderstood. And even when you have friends and community, at times you can still feel largely alone.
Across diabetes online communities, people with diabetes are publicly sharing their stories – stories about their life, their triumphs, and their challenges. We are sharing our own vulnerabilities to elevate diabetes as a condition worthy of awareness, and to help our fellow PWD feel a little less alone. And as communities, our stories generally have an arc of hope, possibility, and strength. We fight for recognition and acknowledgment of the incredibly intense labor we put in everyday, simply to continue breathing.
In recognizing this, I added an action component to my dissertation research. A promise I made to myself when I began my PhD journey was to never do research for the sake of research. I will always do research for the sake of change. Rather than hope that some change would happen once I put results into the world, I worked in a method to elicit change in-real-time. The action group I convened was made up of 8 PWD, called Peer Collaborators. Over the course of a month, they went through a process of identifying ‘the best of what is’ and ‘imagining what could be’ for diabetes online communities. At the end of the month, having reflected a great deal on the strengths and assets of their communities, they designed the #IHearYou campaign.
One of the Peer Collaborators, Kim Hislop, commented during one of our initial meetings,
“I know I am a support person for other people with complications, but where is that person for me?– Kimberly Hislop
When Kim said this, the group took pause. We racked our brains and wondered why there weren’t more people with diabetes-related complications vocal across diabetes online communities. We wondered if the messages about what it means to succeed with diabetes were too narrow across these groups, and if maybe that was a deterrent to sharing their voice? We also wondered if they were already here, but in effect silenced by all the anti-complication stories taking precedence.
The Peer Collaborators wondered what action could be taken within communities to acknowledge the voices that aren’t often heard, to affirm voices who aren’t on the arc of hope and possibility, and to recognizing the ongoing effort people with diabetes are putting forward to live another day.
At the end of the day, diabetes is just hard. While there are major bonuses, like gaining a community, and learning to know your own body really really well, it sometimes still just sucks. #IHearYou
The #IHearYou campaign was designed by the Peer Collaborators as a listening campaign. The goal is to offer an “#IHearYou” to the people who make the community what it is, with the hope that doing so will promote inclusion.
This may look like posting the campaign image and tagging someone in your community who you want to acknowledge. It may look like adding “#IHearYou” in a comment on a blog post or tweet that speaks to you. The campaign was designed to be low-entry.
It is supposed to meet you where you are at.
I hope you will join us in promoting this campaign in whatever form is most comfortable to you.
Without further adieu, I’d like to acknowledge the peer collaborators who designed this campaign. I’m so grateful for the creativity and vulnerability you shared throughout this process.
I wish so so badly that Kim was here to see this campaign come to fruition. She made such a mark on its creation. I’m thinking of her today, and hoping she is feeling heard.
For a wonderful post by Stephen Shaul describing the campaign in more detail, click here.