#IHearYou

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.

Open Access Study of Diabetes Online Communities Now Available

Over the last year, I’ve been working with a stellar team of researchers, clinicians, and community members on a scoping review of studies looking at diabetes online communities (DOCs). This basically means that we did a super intense search of research articles that already existed that talked about or examined diabetes online communities.

Our initial search landed over 14k articles and we systematically narrowed that number down using a set of search criteria. We were trying to understand more holistically what is known about DOCs.

This paper is a result of that objective and we learned a lot.

Here is the link.

When you follow it, there will be a blue box that says “Download PDF”. It will bring you to a login page, but you do not have to log in, it should start downloading on it’s own. Thanks to the American Association of Diabetes Education, this article has become open access!

For the good meaty pieces, skip down to the results and discussion sections. In an upcoming blog post I will also break down some of the cool findings. For now, enjoy a good read. once the dissertation data collection has simmered down a bit I will post more. Stay tuned.

Seven interviews later…

In the last week I have interviewed seven people with diabetes from various social media platforms for my dissertation research. If you haven’t read this blog before or aren’t familiar with me, here is a quick run down of my project:

  • I am studying narratives and counter narratives in diabetes online communities crossing social media platforms. I am doing this under the assumption that public posts talking about diabetes are inherently political because they aim, to some extent, to create change.
  • My study is multi-pronged – involving multiple steps and activities. I am collecting social media data, interviewing people who post, and hosting a peer collaborator group to generate a community action.
  • As a researcher, I am committed to producing new knowledge AND building capacity within the communities I study. I am also dedicated to providing credit and further opportunities to the community members I work with.
  • My style is iterative, meaning it builds on itself and even redefines itself as it unfolds. For example, one of my first interviewees (thank you @breezygfreezy on Twitter) suggested I rework a question. I did that and everyone since has been asked the reworked question instead.
  • Walllllaaaa!

Throughout the course of my graduate program I have used this blog space to talk about my research and the goals I have for the work. Today I want to share some of the insights coming from the interviews and web-scraping I have done so far.

BEHOLD…

One of the most important things to people with diabetes who post content online is to counter the idea that diabetes is easy. This is being executed in many different ways. For some, it looks like intentionally sharing the hard parts of living with diabetes (like the highs and lows). For others, it looks like posting a bill for insulin or a long list of supplies. Regardless of the way it is shared, people online are talking a lot about how the relentlessness of diabetes goes unacknowledged or overlooked. As a person with diabetes, myself, I have also experienced the frustration that arises when someone says, “so you just have to take insulin and you’re fine, right?” So I totally resonate with this one.

Some of the interviewees have surprised me and provided stories and ideas that I wouldn’t have expected, all of those moments of surprise have come with nuance. For example, one interviewee was discussing the difference between surviving and thriving with diabetes. They said that thriving didn’t mean being perfect, nor did it mean never giving up. Thriving meant doing the best one can with what one has. I’m learning that there are little intricacies in the stories we tell, backed up by years of lived-experience and an intense mental processing of that experience.

Another thing I am learning is that for every story (or narrative), there is a counter-story, and a counter-counter story. And so far, I’m finding that people who post about diabetes online are well aware of the story, the counter-story, and the counter-counter story.

Even though people with diabetes cannot be unified due to personality/situational differences, there is something connecting us all.

I haven’t quite gotten to what that something is, but it seems to be there, lingering, waiting to be unconvered.

Wish me luck as I continue to search, discover, and learn within this thriving community.

Cheers to you all.

#DSMA for Research, Option to Opt-Out

Happy #DSMA day! Thank you for visiting this page to learn more about the study. This is also the post where you have the option to opt-out. All study details are below.

Here is the opt-out form. If you would like to participate in the twitter chat but do not wish to have your responses collected as data for this study, please fill out this form. If you would like your tweets to be included, please leave this form blank.

Information about this study:

This #DSMA chat is a research opportunity which is one part of my larger dissertation project. The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of diabetes online communities (DOCs) in order to better understand how the condition of diabetes is being politicized via online social media spaces. This means I am collecting diabetes-related social media data and analyzing it for narrative themes and their connection to social phenomena.

There are some risks to participation. Because the data collected for this study is public-facing social media data, there is a high risk that your privacy and confidentiality will be compromised. While measures have been taken to protect your privacy after the data has been collected (removal of identifiers), there are no protections to privacy within the group or outside because anyone can see or track the content shared on Twitter. There is no compensation provided for this activity. This research may not benefit you directly, however it is possible that the published findings will eventually benefit diabetes communities at a wider level.

Please note that by NOT opting out, you are consenting to allow the research to collect your responses and use them in the data analysis process. In this way, you are considered a research subject. Your tweets will be analyzed thematically. If the researcher would like to quote you directly, you will receive a DM asking for your email address, and a personalized email will be sent to you with the quote requested. If you do not approve, the quote will not be used. This is in line with the Twitter Terms of Service.

Again, if you do consent to use of your data (not opt-out), you will be considered a participant of this research study. This study will enroll a maximum of 2,180 subjects. Your participation does not involve any other activities. However, if you would like to be contacted for other study- related opportunities (eg. in-depth interview), please fill out the form below.

More Information:

WHY IS THIS STUDY BEING DONE?   The purpose of the overall study is to identify and analyze dominant and counter-narratives within a sample of DOCs in order to better understand how the condition of diabetes is being politicized via online social media spaces. While the overall study has multiple phases, this #dsma tweet chat is a part of phase 2. During this phase, the researcher will be collecting social media data over a 3- month from individuals who share about diabetes through various social media platforms. The purpose of phase 2 is to understand the cultural context of the research site in an empowered and nuanced way.  
WHAT WILL I BE ASKED TO DO DURING THE STUDY?   Participation in this tweet chat will mimic regular #DSMA chats. There will be a set of questions asked and you may answer them however you see fit. You are encouraged to interact with others involved in the chat as well. The chat will last 60 minutes and will ask 6 questions.  You will be asked about common diabetes misconceptions, how diabetes is a part of you, and what you want people to know about diabetes. You may also be asked to consent to the quoted use of your social media data, which is optional.  
HOW MUCH TIME WILL I SPEND ON THE STUDY?   The 60-minute tweet chat will take on [DATE] at 9pm EST.  
ARE THERE ANY BENEFITS TO TAKING PART IN THE STUDY?   Being in this research study may not benefit you directly, but it is possible that the findings produced by this inquiry may indirectly benefit your respective diabetes online community.
WHAT ARE THE MAIN RISKS OF THE STUDY? The primary risks presented by this research study are breaches of privacy (others outside of the study may find out you are a subject) and/or confidentiality (others outside of the study may find out what you did, said, or information that was collected about you during the study).  Although we ask everyone in the group to respect everyone’s privacy and confidentiality, and not to identify anyone in the group or repeat what is said during the group discussion, please remember that other members of the group may accidentally disclose what was said.   
DO I HAVE OTHER OPTIONS BESIDES TAKING PART IN THE STUDY?   This research study is not designed to provide treatment or therapy, and you have the option to decide not to take part at all or withdraw your participation at any time without any consequences.

Your identifiable data will be kept only on a master list on a passcode locked computer that is not Wi-Fi-enabled to prevent access by unauthorized personnel. Once data analysis is complete, your identifying information in the master list will be destroyed. The data you shared, once de-identified (within 24-hours of the time the PI receives your signed consent form), will be stored in a password protected UIC Box file for a period of five years.

This message has been approved by the ethical review committee at my university. For questions, concerns, or complaints about the study, please contact the PI, Heather Walker at530.755.7673 or email at hgabel3@uic.edu or the faculty advisor, Dr. Joy Hammel, at 312-996-3513 or hammel@uic.edu

If you have questions about your rights as a study subject; including questions, concerns, complaints, or if you feel you have not been treated according to the description in this form; or to offer input you may call the UIC Office for the Protection of Research Subjects (OPRS) at 312-996-1711 or 1-866-789-6215 (toll-free) or e-mail OPRS at uicirb@uic.edu

To print a copy of this form for your records, right click on the webpage and select print. Then select “save as PDF”. Doing this will produce a printable copy.