#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.

#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.

The Things They Don’t Want To See.

Last fall, I took a class called Disability and Culture. In said class, students were required to develop and produce a creative project about disability-related conundrums.

Disability conundrums are complex dilemmas. They have no right answer and the more you try and find one, the more fuzzy the situation becomes.

Consider the act of staring.

Curious children with limited exposure to disability stare at disabled people in public places because they are seeing something unfamiliar. The guardian of a staring child will likely correct this behavior, saying “it’s rude to stare.” That child learns a lesson through the repetition of this process: don’t look at disabled people (or pretend like you aren’t looking). And as that child grows into adulthood, they carry this lesson into public situations. Overtime it morphs into a cultural norm.

If the cultural norm suggests you ought not look at disabled people because doing so is rude, what are the consequences? The first consequence is that disabled people go unacknowledged, literally ignored. Invisible in public because those around them have been taught (socialized) to believe that non-acknowledgement is kinder than staring.

Imagine now, an able-bodied adult becomes woke (being aware of – as it relates to social injustice) to the consequences of the “don’t stare” norm. This adult actively decides to break the social norm. The adult spots a person in a wheelchair rolling into an accessible cafe, and does the inconceivable. The adult looks. Instant discomfort. Cue inner-dialogue: “oh no, did I look too long? Are they offended? Should I smile? Is a smile patronizing? How would I smile at a stranger who wasn’t in a wheelchair? okay. Do that. Smile like they aren’t in a wheelchair. Shit. That wasn’t right. They look offended. Walk away… quickly. Why was that so awful? uh. Never again. ” The adult, feeling both embarrassed and rude, decides the effort wasn’t worth the resulting discomfort. The adult assumes that the interaction was equally uncomfortable for the wheelchair user and so also feels guilty. The need for the social norm of “don’t stare” is affirmed, and the adult goes on with their life trying to avoid exchanges with disabled people believing -with experience as evidence- doing so is what is right for both parties.

Here in lies the conundrum: to stare, or not to stare?

Is it better to look at the risk of an uncomfortable encounter, or better to continue not looking at the risk of reproducing the invisibility through which oppression is born?

At first, it seems rather obvious, doesn’t it? If we are trying to create a more just world, risking uncomfortable encounters is preferable to risking the continuation of inequality. However, there is more complexity here. This question requires us to examine the power dynamics between the two groups currently and historically. Okay. Say we do this… We might determine that, given the history of oppression and the current demand for physical and mental ‘fitness’ and of having a species-typical fully-functioning body, disabled people hold less social and economic power than do able-bodied people. The problem with power, is that those who have it tend to prefer keeping it. Despite idealizing a more equitable and just world, when getting there comes to giving up power, we find ways to justify keeping the power balance as is. That is, we accept injustices when they threaten our own sense of power AND when we can find a way to disguise or justify the problem.

The adult discussed above left the interaction filled with assumptions about how the encounter must have been for the disabled person. The adult feels justified to not look at disabled people because in their mind, not looking is more comfortable for the disabled person too. The justification comes from the same place of righteousness that does a guardian’s correction of a staring child. Able-bodied people tend to believe that if they themselves were disabled, they would prefer to not be stared at.  Because it is their imagined preference, they project it onto those who live the imagined situation.

While the conundrum begs the question: to stare or not to stare, the central issue is not about staring at all. The central issue comes down to assumptions. It comes down to the powerful making assumptions about (whom they perceive to be) the powerless based on imagined futures. This means that the social norm which seems to exist to protect disabled people from rude staring exists not because disabled people asked for said protection, but because able-bodied people imagined that they would want that protection if the tables were turned. “If I were in a wheelchair, I’d hate it if people stared at me.”

Assumptions about what disabled people think and feel, about how they live, how they hurt, and how they experience interactions with able-bodied people are what hold up and maintain the injustice.

As a person with diabetes, as a disabled person, I want change.

I have found that clinicians, researchers, and even friends and family see only the parts they want to see. They look enough to affirm their expectations and imagined aspects of what diabetes and disability must be like. They assume the rest.

For the class I took last fall, I decided to take up staring as the conundrum for my project because I want to challenge assumptions. The result is this blog post and the subsequent video.

As a person with diabetes, as a disabled person, I make change.

Here, I control the staring. I speak for myself and my experience cannot be imagined. I make the viewer see what I want seen. I demonstrate the hardship of diabetes on a social level. The hardship is not about the needles. It is not about drawing blood. Although, I do call for staring at those things as well. The hardship of diabetes demonstrated here is about being perceived through the lens of an imagined future.

As a person with diabetes, as a disabled person, I am change.

My existence is not limited to the imagining of what it must be, but it is impacted by the knowledge that what I do to survive consists of the things they don’t want to see.

Examining Representations of Diabetes

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I’m enrolled in a course this semester called “Disability and Culture.” In this class we are looking at representations of disability in film, art, writing, etc. A major take-away from our first lecture was that representations of disability are inherently value-laden. This means that every single time a character or piece of art presents with a disability, there is a value-based meaning attached to it.

Forrest Gump. Hodor. Mad-Eye Moody.

All three characters are defined, motivated, and behave according to the their respective impairments (or rather, to the able-bodied expectations of their impairments). Try and think of a single time you’ve seen a disability presented without some value-based meaning attached to it. You can’t! It’s impossible! Even acute injuries are contextualized, joked about, justified.

Considering this argument, I have been thinking about how diabetes is presented. What first came to mind was of course: fat, lazy, gluttonous, old. Upon a second, and perhaps deeper, reflection I thought: sad, careless, lacking, dependent, unaware, bad.

I’ll be the first to admit I watch a LOT of television. In my observations, the most common representations of diabetes are used as a comedic device or as a plot-pivoting clue. The former is no surprise, right? It might look like this: Character A sits on a couch eating a plate of donuts. Character B remarks “You’re gonna get diabetes.” [Insert laughter here?]. This first common representation of diabetes is one we [in the diabetes online community] have spent post after post, tweet after tweet, trying to dismantle. We do not take this [mis]representation lightly, as it contributes to the stereotypes and stigma attached to living with diabetes.

But the second representation, the plot pivoting-clue, is one we talk about in the diabetes community far less frequently. It might look like this: Crime detective reads blood test results from crime scene, says “The blood sugar level is 350, the murderer must be the wife because she is the only one with diabetes.” My opinion on this representation is not fully formed. I’m mostly filled with questions about how we ought to interpret this as a community. Is the diabetes responsible for the crime? Are people with diabetes easier to catch? Are we being objectified in this process? Please let me know your thoughts in the comments. gfn15xals34wy

In a first attempt to tease out the meaning behind diabetes represented for the purpose of developing or pivoting a plot, I’d argue that diabetes is inconsequential or expendable in this context and can be, rather, taken just as measurable human deviance. In other words, the representation is not of diabetes itself, but simply as a deviant Other. I use deviant in this context to mean “away from the average.” If we take this assumption to be true, then we can also ascertain that diabetes is Other-ing. Diabetes is that which makes us different.

Diabetes is the contrast, the evidence, the scapegoat, the giveaway.

Diabetes is that odd deviation see-able through the microscope.

Diabetes is, then, not only what makes us different, but also what makes us see-able. It makes our invisible variation of difference visible.

I’m not sure about you, but it is curious to feel seen.

#MasterLab Recap and Thanks

1-300x300Last week I attended #MasterLab, an advocacy event put on by Diabetes Hands Foundation through their Diabetes Advocates program. Overall the day was a spectacular success. Throughout this week, I will release reflections on specific talks. For now, a general overview of the event with gratitude toward the organization that made it all happen.

Brief Recap:

Not only did this advocate-centered event provide vital advocacy information about clinical trials, workplace protection laws, and legislation practices, but also gave time to discuss critical aspects of DOING the work, like prioritizing self-care, and being bold in the ask process. On top of covering a wide range of topics, MasterLab attendees were provided Advocacy Plan workbooks to begin PHYSICALLY drafting a personal advocacy plan. AMAZING, right?! MasterLab wasn’t just about hearing the information, nor was it just about bringing everyone together to foster community-support and groundswell around individuals’ advocacy efforts. MasterLab was about providing a practical formula for generating plans of action. It was a truly masterful event (please excuse that dad-joke, I couldn’t help myself). I will be sharing the advocacy plan I wrote and shared while in attendance at MasterLab in the next few days.

Sincere Thanks: 

I want to take a moment to thank everyone who made MasterLab happen. Diabetes Hands Foundation, you continue to add so much value to the community. I thank you for making us, the advocates, your advocacy project. Our community is more equipped and more organized in our advocacy efforts because of the events and resources you provide. Thank you.

Also, there were many sponsors who funded MasterLab itself, and also forked over a chunk of change for many of the advocates in the room to be there. Bringing us all together is vital to our success, and I thank every single sponsor that contributed to our physical togetherness.

Last but not least, I want to thank all of the friends who offered hugs and support at MasterLab. My life is better because you are in it. The tribe we have all made and are part of keeps me going in my own self-management, research, career, sanity, the list goes on and on. Thank you for being you and for continuing to attend these in-person growth-inspiring events.

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Pre-Conference Excitement: MasterLab Edition

Diabetes advocates are my favorite people and I get to see many of them in just a few days. Suffice it to say I’m a little more than giddy. I’m practically bouncing out my chair right now as conversations in the Facebook group turn to packing tips and roommate assignments.

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My current mood

So what is bringing all of us together?

MasterLab!!

MasterLab is a diabetes advocacy event hosted by the Diabetes Hands Foundation through their Diabetes Advocates platform and program. To make things better for attendees (e.g. patients who have medical bills for days) they offer a number of scholarships that include travel and hotel stay. I received such a scholarship, making my own attendance possible.

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Tearfully grateful

Why is MasterLab so wonderful? Well, they bring in speakers who deal in advocacy as it related to diabetes and as it related to disability in general. Speakers like Mark Heyman (who I am personally indebted to for editing the application that got me accepted to graduate school) are sure to both inform and inspire. At what other event can you find a lineup of speakers who so broadly address matters of advocacy geared toward the advocates themselves?

The following are taken directly from the Diabetes Advocates MasterLab event page. Two  of the offered sessions are:

  • “Diabetes and Mental Health: Advocating for Others While Taking Care of Yourself” Dr. Mark Heyman, Center for Diabetes and Mental Health. Mark Heyman is a diabetes psychologist, person with type 1 diabetes, and Founder and Director of the Center for Diabetes and Mental Health. We will learn how can advocates communicate the psycho-social and emotional challenges of diabetes in their advocacy work and take care of themselves in the process.

AND

  • “Building Collaboration and Sustainability in Programs for Nutrition and Access, in Underserved Neighborhoods”. We will learn from Roniece Weaver, Executive Director of Hebni Nutrition Consultants, Registered Dietician and author, about how she has brought health messages to underserved populations in Orlando, in a different delivery mode. This is a great example of the opportunity  that might exist in your community, to work offline, make a difference and support local, smaller organizations.

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Aren’t those amazing!?

Is your mind completely blown like mine was?!

If these descriptions appeal to you, but you are not attending MasterLab, fear not!

I, along with many other advocates, will be there live-tweeting and blogging about everything we learn.

If you are interested in participating in the live-tweeting, follow me here @HeatherGabel, and make sure to check in with #MasterLab.

You will not miss a thing. Promise.

See you at MasterLab!

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What is the Story We Tell?

The following post was inspired by the twitter chat #dsma on June 1st.  Diabetes Social Media Advocacy is a great organization in the diabetes online community that connects people with diabetes to the support they need via social media in many ways. The twitter chat using #dsma is one such method. With that said, this post is not diabetes-specific. It is rather, disability wide: chronic, physical, mental, acute, endocrine, and everywhere in-between.

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In 2013, scholars Eve Tuck and K. Wayne Yang published an article called “R-Words: Refusing Research.” I linked to the article in PDF form below and encourage you to dig in. It is a very wordy and theory heavy article; consider this your warning.

In this article, Tuck and Yang break down theoretical reasons why study participants (often referred to as ‘subjects’) may refuse participation and how the researcher’s role and goals play into that dynamic. As I read it, I engaged in a process of reflection. How am I doing as a researcher? Am I accomplishing the aims I set for myself at the outset of my academic career? Will the fallout be ethical?

The Tuck and Yang article is poignant in many ways, but two things in particular stick out to me as a member of a researched patient community.

  1. A researcher sometimes acts as ventriloquist by taking the words and experiences of study ‘subjects’ and manipulating them into ‘findings’ that afford credit only to the researcher.
  2. Emphasizing pain-narrative alone in a study is an exploitative act that may retroactively harm the population under study.

The first message listed above hit me pretty hard. I am a researcher and my goal is to facilitate the excavation and dissemination of discovery and truth. However, to do this, I feel compelled to appeal to the requirements of scientific rigor. I wonder, what could be the alternative? Could methodology make a difference?  I decided on the research approach called Participatory Action Research (PAR) because I wanted to avoid ventriloquism. The community members who volunteer are not puppets I use to explain a theory previously hypothesized. Rather, they (you/we), are the story, the evidence, the design, the conclusion. Without them/you/us, there is no study at all.

By doing research, I want to change the process of research itself. A person shouldn’t need a program, a MA, a PhD, to carry out a study. One ought only need curiosity and a well-inked pen.

Secondly, while my internal drive feels genuine, I cannot deny that doing this work may  inflate my position in the academy (the ivory tower). Thus, researching the diabetes community and eventually other health communities cannot be considered selfless by any means. I have a professional stake in doing this, and my success does depend on you: people with bodies that function a-typically. Though, as I consider my position as a researcher, I cannot forget my own place within the we under examination here. I am a person with diabetes even when I am not researching. I, too, have a body that functions a-typically. My primary identity and loyalty lies with the community. I research to ensure our knowledge and discourse is recognized as legitimate. We already know the answers to why peer-support improves our management, to how connection brings us from a place of isolation to community, to why the #DOC came to be. We already know.

The Tuck and Yang article posits that researchers often function within “settler colonial structures.” This means that researchers use the social structure of research and the process of building truth (through studies) in a way that maintains power dynamics as they are. By focusing on the pain-narratives (diabetes distress scale as example) of patients with various disabilities alone, researchers keep patients right where they are: at the bottom of the power-ladder crying for help.

 

I’ve noticed a focus on pain in our own stories via blogs and twitter and I one-hundred percent understand why. We live everyday in the kind of pain that no one can see, pain that we are good at hiding, pain with no physiological origin. Raising awareness about how hard it is to live with chronic illness, diabetes, chronic pain, so on and so forth, feels like justice. It feels like recognition for the hard work we put in to do what everyone else can do without effort. It wouldn’t be right to do all of this without getting a little credit, would it?

Where are we left, however, when the questions asked by researchers stop at hardships?When only our distress is measured, everything we create to balance that distress goes unacknowledged.

When the resources we create go unacknowledged, they fail to reach our comrades who need that access for survival.

Organizations like DiabetesSisters, Diabetes Hands Foundation, and The Betes Org., work to expand that access. Yet, their validation and legitimation depend on a medical structure fixated on what doesn’t work.

I am left asking where our community efforts fit in? Where are we and what is the story we are telling as a patient community, as a group of individuals living with impairments?  What can we do to move the emphasis of study from pain, suffering, and what doesn’t work to success, flourishing, and what does work? Further, if we found a way to do that, is it even what we would want?

 

 

Source: Tuck & Yang (2013) R-words Refusing Research

 

Diabetes Blog Week: Illness Imagined

giphyWell, it is day four of Diabetes Blog Week and the topic today is about our experiences with
healthcare. In this post, I shift the focus a bit to an ideological issue I see as pervasive in the medical community. It has to do with imagined hardship.

Last year, while working as a bartender, a woman pointed to the tattoo on my arm that reads “DIABETIC” and asked, “are you diabetic?” I responded, “yes, I have diabetes.”  It was a slow day at the bar, so I entertained her string of run-of-the-mill diabetes questions.

No, diabetes is not as dichotomous as you would think. No, cinnamon does not reverse it, nor is there a cure.  Yes, I do take multiple daily injections and prick my finger many times a day.  And finally, yes, it could be worse.

Then, the woman offered me credit for my medical efforts, “Uh, I cannot imagine,” with the usual doom-and-gloom tone.

To me, her words translated to, “Your life must be awful.” I went home and reconsidered the disease-acceptance I had built up since the last conversation like this, about a month before. Even a little suggestion that the way I live is far from ideal is a reminder that others would not opt for my life circumstances. “No one would want this” is the thought I am left coping with.

There is a researcher named Peter Ubel who, along with colleagues, compared the way non-sick and able-bodied people expect to feel at the onset of a diagnosis, and the way sick and disabled people actually feel post-diagnosis. Ubel’s findings suggest that non-sick and able-bodied people are poor assessors of quality of life given medical complications mainly because they fail to incorporate adaptability into imagined scenarios.

Individuals like the woman I interacted with, can be narrowly focused on the potential pain of shots or the inconvenience of monitoring blood sugar. These individuals might play out one or two scenarios in which the mentioned diagnosis would limit a freedom they value. As Ubel mentions, the notion of adaptability is absent in the snap judgement used to decide the desirability of a particular lifestyle.

When we form an idea of what life would be like given X circumstances, we miss something. Malcolm Gladwell, in Blink: The Power of Thinking Without Thinking says, “We have, as human beings, a storytelling problem. We’re a bit too quick to come up with explanations for things we don’t really have an explanation for.”

In the context of today’s topic, I draw attention to the fact that among the individuals who overestimate the decline in quality of life given a new diagnosis, who underestimate adaptability, who form incomplete explanations based on limited information, are doctors.

Healthcare providers are not immune to faulty expectations. The trouble we face as a result of faulty expectations are the subsequent treatment options provided.

In my own healthcare experience, I’ve been denied CGM coverage because my management wasn’t ‘good enough.’ I have also been denied disability status because my doctor didn’t see diabetes as a disabling disease (put another way, my illness wasn’t ‘bad enough’).

My biggest frustration with our healthcare system is that the person with the least decision-making power is me, the patient.

I believe this stems, in part, from a system that elevates the physician’s, the payer’s, the industry’s perspective over mine. It stems from a system that values my life less because of diabetes.

Source: Ubel, P., Schwarz, N., Loewenstein, G., & Smith, D. (2005). Misimagining the unimaginable: The disability paradox and health care decision making. Health Psychology, 24(4), S57-S62.


Click for the The Healthcare Experience – Thursday 5/19 Link List.
Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Diabetes Blog Week: Wordful Wednesday

The topic for today asks bloggers to discuss their diabetes language preferences. What does each blogger prefer? “Person with diabetes”, or “diabetic”? I’m thankful to the community member who proposed this topic, because my views on it have somewhat shifted since I wrote about it last. My perspective changed because I’ve learned some disability history!

Below is a visual conception (or formulation) of each way to refer to living with diabetes. I drew it just over a year ago. It not only reflected how I felt about modifiers, but also was a source of pride for me. I had found a way to eloquently express how I experienced subtle language variations.

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However, after delving into disability studies and the critical theory and history that make it up, I have begun to reconsider my formulation.

Did you know that the language we tend to use in the United States is called “person-first language?” It’s a thing! We have a thing! Our community PRACTICES a theoretical (albeit historical) formulation that one can read about in academic texts!

How stinking’ cool is that?

Person-first language is formulated to address the dehumanization that can occur when a person is addressed as a disablement (in this case as diabetes) rather than as a person. Hence, in order to respect an individual’s personhood, “person with diabetes” is suggested. Person-first language isn’t used everywhere, though. This is the part that really hooked my interest as a patient who tends heavily toward person-first language.

An alternative is called identity-first language and it formed, in part, as a rejection of person-first language.

A person who tends toward identity-first language might say:

“I’d prefer you call me diabetic because I recognize that being diabetic does not decrease my personhood. I prefer this because I reject the idea that diabetic is a derogatory word.”

In this formulation, identity-first language actually fights stigma by rejecting the negative association all together! It functions to TAKE BACK the word completely! What’s more, it is used as often in the UK as person-first is here!

WOW! Right? Is this stuff mind-bending or what? Could the words we use be dictated by what region we are diagnosed?

After being exposed to identity-first language, what I can certainly say is that my feeling of righteousness when using person-first language is shaky at best.

Take this discussion as food for thought because there is no right or wrong, there is only what works for you. What we can do is make a choice and stand by that decision as informed patients.

What sits right with you?


Today’s topic: Click for the Language and Diabetes – Wednesday 5/18 Link List.
There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

Diabetes Blog Week: Tuesday Take-Away

 

Welcome to Day 2 of Diabetes Blog Week. The topic revolves around the mental and emotional aspects of living with diabetes and what each of us bloggers does to cope with the stresses diabetes brings.  The coping mechanism that suits me best as I move through the trials of diabetes is curiosity. Becoming a researcher in diabetes isn’t a selfless one. When I am working on untangling the intricacies and complexities of diabetes, I am happier. I am steeped in project and connection when I am interviewing, coding, reading, and learning. xt9dpldjhzzktonen6

For example, learning that there ARE researchers who are proposing the application of complexity theory to diabetes clinical practice thrills me! What thrills me more is knowing that I bring some of our perspective to this growing body of research.

All of this researching helps me cope personally, but it also boosts my pride in our community. As we dig deep and write about our experiences, researchers are fumbling to explain it in academic terms. It makes me want to send each and every one of you GIANT virtual hugs all the time for being so wonderfully in tune with your mind, spirit, and body.

If I were to suggest anything to a PWD experiencing burnout, it would be this…

“Never let a good crisis go to waste.”

As hard as it is to write during burnout, let us try. Because our stories ARE data, our words are future findings. Knowing that the power of our hardships can be collected and explored is extraordinary. I don’t know about you, but that’s enough to keep me going.

If you want to look up the complexity theory in diabetes practice, here is a good place to start: Cooper, H. C., & Geyer, R. (2009). What can complexity do for diabetes management? Linking theory to practice. Journal of evaluation in clinical practice, 15(4), 761-765.


Today’s Topic: Click for the The Other Half of Diabetes – Tuesday 5/17 Link List.
We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)