FUNDING! Get out?!?


I am still in a state of shock and disbelief about what I am about to share… It’s good news, no, great news. It’s the news I needed to ‘just keep swimming.’

You see, I had recently failed my proposal defense. The defense was brutal; it totally kicked me down. I was excited and engrossed in the carrying out of my project going into it, and completely deflated by the end. In just two hours, too. Three years of planning, networking, learning, and heart-investment just felt a waste. I took about two weeks to feel that ickiness. I allowed myself the time to think about it and process. And then, I moved on.

I started throwing myself into projects. The result of which is three completed manuscripts and four more in progress. Also, I am writing a book with two friends and colleagues (more on that in another post). I shifted modes and started giving more time to the academic work of others, helping them work through hang-ups like I was, in that same moment, experiencing. I scoured the internet for funding opportunities, open collaborations, speaking engagements, and the like. I’ve been applying to so many things the last month I had to start a spreadsheet to keep track!!!

Having emerged from that haze of applications, I can say with undue honesty that my underlying goal was to find a source(s) of external validation. I desperately needed to feel of value in this particular way. And in that process, I went from feeling like a failure with bunk ideas to a thoughtful and masterful researcher again. Rather than build myself a ladder to climb out of the hole I was in, I dug a system of tunnels!

All of this is to share the impetus behind the GREAT STINKIN’ NEWS!  One of the applications I submitted was a grant for the UIC Provost’s Graduate Research Award. It’ s $5,000 grant to support preliminary dissertation research. And guess what?



This is huge news in the academic world, but also for the community members I am and will be working with throughout the rest of my journey as a graduate student.

You all, I get to PAY YOU for your time and ideas.

I’m over the moon and back on the horse. I am planning to share a series of blog posts to discuss what my project is and how I will be doing it. I can’t wait to get this thing finally approved and move onward, my friend, onward.

For now, I will leave you with the suggested title:

Politicizing the Condition of Diabetes Online: Counter-Narratives and the Pursuit of Normalcy

Whoo hoo!! Let’s do this thingy!

Diabetes and Motherhood

My pregnancy was a surprise. It was a happy, warm, lovely, surprise, but also a terrifying one. My diabetes wasn’t well managed and my life wasn’t where I thought I wanted it to be before starting a family. I was gearing up to write my masters thesis and, well, I’d recently been mugged and was filled with anxiety about the brevity of life. I wanted to accomplish my goals, only one of which was becoming a mom. When I learned I was pregnant, I was afraid I’d already caused the fetus damage. The day prior to peeing on that stick my blood sugar rose to 513. I’t’s been over a year and a half and I still remember that number. I was also relieved to learn I could conceive. Finding out whether or not I ever could is something I was dreading. I so badly wanted to experience pregnancy and to have a baby, but a little bit of me never wanted to try in case I couldn’t. I feared that heartbreak. But, there I was, unexpectedly pregnant. Both celebrating my ability to create life, and crying through the unknown of getting through a pregnancy with diabetes.

Pregnancy was not a glowy time. My feet were swollen, I had epic heartburn, I cried all the time, and I had to get down on one knee to pick up the dog’s poop. I had so many doctors appointments I had to delay taking the oral part of my preliminary exams, and I was as tired as a night owl at dawn. But, I got through it. I got through it with the best diabetes management I’ve ever had. Also, I was a forking boss at birthing that baby. I labored for 48 hours and then had a non-emergent cesarean section.


Then, I became a mom. My son, called Bubs on social media, is a light in my life. He is one of my motivators for good health and a source of happiness. As a mom, there is this little bit of fear that creeps up now and again, though. I try and repress it, or face it and accept it. But it is cyclical. Even when I accept it, it comes back in new ways. It is diabetes. It’s my diabetes and the fear that I may pass it to him. It’s the fear that he may see me have a seizure one day, or have to intervene to help. This is a fear that just sits there, dormant until it’s not. And I think it just sits there because it’s an unknown.

When Bubs was just four months old, I did have a seizure in my sleep and he was in the room. There is little I’m more thankful for than the decision to not co-sleep that night. I scratched the fork out of my own face during the seizure, the effects of which remain in scar-form below my right eye. I’ve had a couple other diabetes-related sicknesses recently that reduced my capacity to care for him.

Being a mom with a chronic illness is a careful psychological balance of acceptance, self-care, and pushing through the tough stuff. I’ve never felt so tested, nor so rewarded. But, by golly, this shit is HARD. I need more help than I’m usually willing to admit, and I’m always wondering if what I’m able to do and give is enough.

I have talked with other mommas with chronic illness about this, and some other moms who don’t. Guess what? We all feel this way. We all worry that we will not be able to be what and whom our kids need us to be. We all play a game of push through and surrender, push through and surrender. We all hope and cross our fingers that our kids will accept us as we are, with all our flaws, disabilities, and eccentricities. We are all just doing the best we can with what we have got going for us.

My goal in this post is not to claim normalcy or to align my diabetes motherhood with the able-bodied experience. Our experiences are different. Motherhood with diabetes is not the same as motherhood sans diabetes. I will never have just motherhood. But, I’m okay with that. I know that the challenges in my life have mostly made me stronger. Some have broken me down, but mostly I’ve come out of traumas with growth.

Life with diabetes has taught me that motherhood with diabetes is a damn good opportunity for growth. Parts are going to forking suck. But, other parts are going to be beautiful. Motherhood with diabetes is something I will never take for granted. Motherhood with diabetes is motherhood, and I’m ever grateful for that.

Now, if I could just get through all this laundry….

On the question of disability… (again)


I am currently taking my last formal class toward my PhD in Disability Studies. Yahoooo for milestones! The class is called Disability Oppression and Resistance. In class last week, my professor made an argument that clarified the question of disability as it relates to diabetes (though he wasn’t applying his argument directly to this).

He argued, “You don’t have to know you are disabled to be disabled, if society treats you as disabled then you are! Society chooses.” In other words, what determines your qualification as disabled does not depend on your willingness to identify, nor does it depend on the physical impairment you may have. Rather, it depends on how society treats you.

In the context of diabetes, then, I’m considering, how does society treat us? Based on my lived experience, constantly hearing things like “I could never do that,” and “you should not eat that, right?” leads me toward the conclusion that we are treated like we are different. And moreover, we are treated like we are different in the bad kind of way. And this reflection is not just individual. There are systemic ways we are treated differently. For example, I have over 2k in medical bills I’m slowly paying off because my body doesn’t function typically, because it needs more. We’re made to pay outrageous prices for medications without which we will literally die. This is oppressive. I’d love to take that 2 grand and travel to Europe. I have able-bodied friends doing that right now.

Based on my studies and deep dive into disability identity theories – reading about the marginalization and degradation of minority identity- leads me toward the conclusion that society treats us as Others (the capital O indicates a marginalized other). But, from what I’ve seen, our collective resists that. It’s complicated.

In the diabetes world, we reproduce a relatively sticky social contradiction. We fight for our right to accommodation at school and at work. We simultaneously fight to not be seen as limited by the condition. We want the benefits of association without the stigma we believe is attached to it. Can we have both? Or is this contradiction holding us back?

As I continue to develop my dissertation project, I’m curious about what we resist, how we resist it, and what we are trying to accomplish. What are we hoping for by spreading awareness messages? If we are fighting against being associated with the disability identity, what do we hope will come from others thinking we aren’t? If we are fighting against the diabetes stereotype, where do we direct our messages? What changes are we hoping to see?

If there are gatekeepers, who are they, where are they, and how do we get to them? When we lodge counter-arguments to the social construction of diabetes as the lazy person’s disease, who do we send them to?

I want to know so much more about the oppression we face and what we do to resist it. What do you think about this? What do you resist? What engages your cyberactivism? Where do you think we are headed from here if we continue to resist the ways we have been?





Where I’ve been

I’ve been silent on this blog since May of last year because I took the time to focus on my MS thesis and then passing my preliminary exams toward my PhD. Oh, and I had a baby. You can look forward to this blog picking back up now.

I’m a working mom who brings her son to work because childcare would cost me more than I make working. This blog will occasionally contain my kid. I call him Bubs.


Diabetes Blog Week: Day Two – CO$T

So, today in #dblogweek, we talk dolla dolla bills ya’ll. Just a forewarning…


Below is the prompt:

Click here for the The Cost of a Chronic Illness – Tuesday 5/16 Link List – Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

My Response:     (… warning rant coming) 

Last September, when I turned the lovely age of 26, my insurance changed.  My new insurance covers about 80% of all durable medical equipment. There is no deductible, and no co-pay. I just have to pay 20% of whatever I need. Seems reasonable.


After nearly ten years of pumping, I was forced back to multiple daily injections (MDI) because my income wouldn’t allow for that 20%. So here I am, about eight months later, still royally pissed about it all. I’m not upset that I have to use MDI. I’m doing really well with it, best management in a while actually.

What I am upset about is the fact that my insurance is allowed to dictate what treatment and therapies I use by covering the cheaper options at a higher rate. I’m infuriated by the fact that our healthcare system prioritizes their bottom-line above my health.

In the past, I’ve argued the case that all chronic illness = disability –> because of the cost. In the US we are made to pay for the care and supplies we need to survive. The lives of those with more resources are seen as more valuable than are those without. This is undeniable if you just look at the rhetoric we use to talk about healthcare.

We talk about freedom – freedom to choose what kind of healthcare you want. Freedom to not help pay for your fellow citizen health, because what’s it to you anyway? Here’s the problem: We have a fundamental and systemic attribution error occurring EVERYWHERE. When a poor person relies on medicaid for insurance, we assume they are lazy free-riders. That is, we attribute their use of government funds to their character, or lack thereof. However, when we get fired and are forced to rely on government assistance to make up the income, we attribute our own use of it to circumstance.

At a systems level, people with chronic illness are punished through forced expenditure. My body doesn’t meet the norm. It requires more. So, I am automatically and forcibly entered into a market, in which those who do  meet the norm will never need to “choose.”

So, my “freedom” as a chronically ill person, is to choose between a therapy that costs me $500/month out of pocket, and a therapy that costs me $200/month.

It doesn’t feel like much of a choice at all. It doesn’t feel like freedom.

It feels like discrimination and deception.


Diabetes Blog Week: Day 1


I’m so happy it is May already and it is Diabetes Blog Week!! Thank you to Karen at Bitter-Sweet Diabetes for once again hosting this important week. EIGHT years folks! Woop-Woop!!

Today’s prompt is: 

Click here for the Diabetes and The Unexpected – Monday 5/15 Link List
Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?  Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?  (Thank you, Heather, for inspiring this topic!)

When diabetes doesn’t play by the rules I suggest the following:

When you are unexpectedly hyperglycemic:

  1. Keep a mini-trampoline handy. In my experience it works best at activating the insulin you already injected or pumped in. giphy2
  2. Have a low-carb, low-protein snack handy for when you get the high-blood glucose hungry hungries going on. When blood sugar is high, we want to not make more work for the kidneys by asking them to process more protein. Pick something like sugar free jello and eat as much of it as you want. Mmmmm. Jello. giphy3
  3. When you are in range, tell your friends and family that you can be kind of a bummer-tastic a-hole when your blood sugar is high. But you don’t like being this way, so tell them winter is coming. That way, when the hyperglycemia comes on, they know to be more sensitive to you.  giphy4

When you are unexpectedly hypoglycemic:

  1. If you’re like me and tend to eat all the things when you are low, at the ten minute mark, take insulin for the carbs you ate minus 15-20 grams (depending on the low – also CONSULT YOUR DOCTOR FIRST). We might get a little fluffy doing this, but it is better than skyrocketing up to the 300 post low! giphy5
  2. Be kind to yourself. Lows happen. giphy6

Welp! That is it for me today! See ya tomorrow!

An Open Letter to The National Institute of Diabetes and Digestive and Kidney Disease (NIDDK)

Dear committee members of The National Institute of Diabetes and Digestive and Kidney Disease,

I am Heather Gabel, student researcher at University of Illinois at Chicago, diabetes advocate and fellow, and blogger in the diabetes online community. I would like to thank the committee for hearing my perspective of the funding structure and policy of the National Institute for Diabetes and Digestive and Kidney Disease (NIDDK) and what the American Diabetes Association is doing to confront the problem of inadequate psychosocial care and treatment for people living with diabetes. I write to you today, committed through professional and personal experience, driven by an impassioned need for change for the diabetes community. I believe that change starts where knowledge is produced: in the labs and research centers working tirelessly to reduce the burden of diabetes.

Diabetes has been called an epidemic in the United States. Nearly 30 million people have been diagnosed and 81 million either prediabetic or undiagnosed, making up just over 29% of the population. The media, the public, and doctors alike see diabetes as a killer; a killer of the economy, a killer of people, a killer of life as you know it. Diabetes is the thing your family member doesn’t take care of. It’s the little voice in your head telling you not to eat an unhealthy meal. Diabetes is the joke no one laughs at anymore. Diabetes is linked with obesity, kidney disease, and many other terrifying complications. Because diagnosis rates are still rising and the costs associated with its maintenance and care continue to skyrocket, billions of dollars have been thrown at curative research and the development of technologies and therapies to reduce those costly complications of poorly-managed diabetes. What is even more striking, is that despite all of the funding, which is estimated at about 1 billion dollars in 2016 alone, 15 million of the 30 million diagnosed do not meet even the basic health outcome goals set forth by the American Diabetes Association. I’ll repeat that again. Fifty-percent of all people living with diabetes in the United States are considered non-compliant. And I will be the first to admit that I am among them.

I was diagnosed with diabetes when I was eleven years old. I have worn an insulin pump for 10 of my 15 years, and been on injections the other five. I have checked my blood glucose over 33,000 times. I’ve seen my endocrinologist 4-8 times per year since diagnosis. I spend about 8,000 hours per year self-managing my diabetes. And, I have been wearing a continuous glucose monitor for the last three years. I am here to tell you that all of this is not enough. I, like the other fourteen-million nine-hundred ninety-nine thousand, nine-hundred ninety-nine people with diabetes not meeting basic health outcomes in the United States, do not have the things I need to be healthy.

You see, managing diabetes doesn’t end after the finger stick and the injection. Conversely, my own experience leads me to believe it doesn’t even start there. Diabetes management is about more than the medical procedures; it is about balancing the psychological and social nature of living with a disease that requires eight-thousand hours of self-management per year. Diabetes is about navigating relationships jeopardized by the irritability that comes with elevated blood glucose. It is about accepting the forever of it all. Diabetes is about preparing for every meal, every walk around the block, every trip to the grocery store, every day at work with precise tools and backup plans.  The problem in the United States is that our health care system largely fails to recognize these psychosocial elements of diabetes at all. Diabetes is a complex disease treated with only with simple solutions.

On November 22, 2016, the American Diabetes Association released a position statement to address the staggering rate of sub-optimal health outcomes in the diabetic population. They argue that diabetes “management cannot be successful unless lifestyle and emotional status of the individual is taken into consideration”. The position statement, geared toward providers, pushes for a more complex plan for diabetes care and treatment. It urges practitioners to focus on the psychosocial elements of diabetes in their practice. I’m thankful to the American Diabetes Association for releasing this pivotal position statement. They are the first major diabetes organization in the United States to do so. With that said, addressing solely providers does not quite go the distance.  Because research on the psychosocial elements of diabetes has only gone so far as to demonstrate that there is a substantial unmet need within the diabetic population, solution-based treatment plans have yet to be developed. The American Diabetes Association is going to begin training providers to identify diabetes-related psychosocial problems in their patients, but because there are no evidence-based treatments specific to diabetes, their training will stop there. If providers are able to identify but not treat a psychosocial problem, the problem persists. People with diabetes will continue to not get the things they need to be healthy.

This is why it is so important to begin shifting the focus of diabetes research toward psychosocial interventions, therapies, programs, and services. Given the complex nature of diabetes, and evidence demonstrating the development of psychosocial problems resulting from it (such as diabetes distress, anxiety, disordered eating), we need this shift to lean toward solution-based research. We need to look for and test a multitude of programs and supports with the potential to reduce the psychosocial burden of diabetes. Perhaps if we can identify solutions to the psychosocial problems, we will be able to live in a country where a higher percentage of people with diabetes meet basic health outcome goals. Perhaps we can even live in a country where people with diabetes are able to thrive just as any other American would.

We have to start creating a system of care that provides what is needed. I believe we can do this by pivoting the research priorities at the National Institute for Diabetes and Digestive and Kidney Disease toward solution-based psychosocial therapies. I ask the committee to consider forming a new tier of research dedicated to this work. There are several community organizations like the Diabetes Collective Inc., DiabetesSisters, Diabetes Hands Foundation, and College Diabetes Network, who have generated and continue to provide psychosocial services to people with diabetes in the U.S. Their collective service-base is in the millions. Leaders of the these organizations, namely, Christel Marchand-Aprigliano, Anna Norton, Gene Kunde, and Christina Roth respectively, are eager to partner with researchers examining psychosocial problems. The capacity is there. The community is willing and able.

We must make this shift because diabetes is not the thing your family member doesn’t take care of. It is the thing they need help with. Diabetes is only a killer when we fail to discover alternative therapies and supports for those impacted by it. Diabetes is not a disease easily managed. It is a complicated, messy chronic illness that interferes in every life experience. We have a responsibility to discover innovative interventions and therapies for the 15 million people living with diabetes in the United States, myself included, whom are being failed by the current medical system despite everyone’s best efforts. We have a responsibility to extend our research beyond the bounds of finger sticks, injections, and the like. We have a responsibility to generate the evidence-based research needed to adequately train providers to move beyond identification of a problem and toward the delivery of a solution. The National Institute of Diabetes and Digestive and Kidney Disease, as a generator of knowledge, has a responsibility to field diabetes-specific psychosocial research. As a person with diabetes, I implore each committee member to consider the potential impact doing so could have on people with diabetes in the United States.



Heather Gabel 

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


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.

Could it be the Novelty?


Many of us (people living with diabetes) share a story: we have experienced periods of isolation due to diabetes-specific challenges. Some of us went years before ever meeting another person living with diabetes. And perhaps most pertinent to Diabetes Online Community (#DOC) members, we know that magical feeling of complete relief when we are finally able to say it like it is to those who understand.

When I consider my own experience as a DOC community member as evidence of the power of peer-support, my assumption is that the DOC works for two main reasons:

  1. because it removes the barrier of isolation and
  2. because it is stacked with insider-generated knowledge on how to live better with diabetes

There are MANY additional reasons that explain why the DOC helps people with diabetes. You probably have a laundry list of reasons and I encourage you to add them in comment form here. Another part of the story we share as people with diabetes are the reasons why and how our sources of support serve us. A question I’m trying to answer through my own research, is “what is it about participating in the DOC that most benefits people with diabetes?” I want to find that one magical bean that keeps all of this growing and thriving.

A new article published in Personality and Individual Differences, The Official Journal of the International Society for the Study of Individual Differences (ISSID), offers a perspective I hadn’t previously considered. The open-access article is called, Understanding the need for novelty from the perspective of self-determination theory, and can be found below:


This article proposes that novelty, explained as a drive to ‘seek out new experiences’, could be an intrinsic and universal human need. The findings suggest that seeking new experiences is a mechanism of self-motivation necessary for optimal self-realization.

“Furthermore, if people do not seek novel activities within the tasks they do in the workplace or in leisure time, they will likely experience boredom and maladaptive outcomes like low self-worth, negative affect, low life satisfaction and psychological well-being.” (González-Cutre et. al, 2016).

If their assumption is correct, then its application toward the diabetes self-management corpus is a natural fit! Doing the same diabetes-tasks over and over leads to burnout. Our lived-experience shows us this. If my insurance wont cover alternative therapies like insulin pumps, continuous glucose monitors (CGMs), oral medications, etc, and or my doctor isn’t comfortable prescribing them, then how can I integrate a variety of novel tasks into my self-management toolkit that could potentially reduce the frequency of burnout?!

When my self-management becomes monotonous and boring, I do experience maladaptive outcomes like those mentioned in the excerpt above. My perception of self-worth decreases. That is to say that in burnout I literally feel like I matter less, am worth less, deserve less. Experiencing this sensation is incredibly maladaptive and generally leads to a slew of other problems. My health suffers, but so do my relationships, scholastic capacity, dependable-ness, and inner-drive.

Burnout, therefore, is a HUGE reason I need the peer-support I seek. I need to not only talk about the challenge, but also to hear novel ways in which others like me have transcended the process.

With that said, my experience is only one perspective and is not representative of the diabetes community as a whole. My question to you then, DOCers, HCPs, researchers, is could it be the novelty?

Could it be that when a person with diabetes encounters the world of the diabetes online community, that the novelty itself is a mechanism of its success?

If we, yes, agree that novelty is one aspect of why the DOC works, then what else can we know? Is novelty directly related to burnout cessation, to a decrease in diabetes-related distress? How can we use this as a community to inform the resources we offer?



David González-Cutre, Álvaro Sicilia, Ana C. Sierra, Roberto Ferriz, Martin S. Hagger, Understanding the need for novelty from the perspective of self-determination theory, Personality and Individual Differences, Volume 102, November 2016, Pages 159-169, ISSN 0191-8869,