Could it be the Novelty?

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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:

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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?

 


Citation:

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, http://dx.doi.org/10.1016/j.paid.2016.06.036.
(http://www.sciencedirect.com/science/article/pii/S0191886916307863)

 

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On Saying Yes: Another MasterLab Reflection

Have you ever been witness to something unjust – someone being teased or treated unfairly? Chances are you have. Chances are also high that upon witnessing such an event, you have felt a specific kind of deep-seeded urge to somehow restore that balance and justice. However, if you are anything like me, that urge is often ignored. I push it away in fear of possibly making the situation worse or because I feel virtually powerless to help. What is more, this urge bubbles up for bigger events, too. For example, my injustice antenna alarms wildly when I hear about a person with a diabetes being hospitalized because they couldn’t afford insulin. I become simultaneously angry and helpless toward a system that unfairly discriminates against those living with chronic illness by making them pay for their life-sustaining medicines. I sometimes feel powerless to make any change to that system because I rely on it for my own wellness, and because I am just one single person. Being at MasterLab this year was eye opening in that it truly challenged the helpless part of my response to the injustice antenna going off.

One of the best talks of the day, and the only one that got a standing ovation, was given by Roniece Weaver, Executive Director of Hebni Nutrition Consultants, registered dietitian and author. She spoke about collaboration and sustainability when attempting to make change with underserved communities. Weaver began her talk with an array of statistics and findings from her own studies on nutritional educational program interventions. Her strategy was to provide nutritional education to communities who lacked access to such information. At first I was rolling my eyes.

I thought to myself, “Here we go another researcher blaming diabetes on individuals for poor food choices and ‘lifestyle factors’; Another researcher who expects that the prevalence of diabetes is a problem of the person and not the society and environment in which that person lives.”

However, about midway through her talk, Weaver’s tune changed. She shifted her position to include the social components contributing to health disparities between privileged and underserved populations. Weaver and her team went beyond education. They also brought produce to the mom&pop shops in food deserts that typically only served the usual gas station food options. Weaver said, “we needed to increase access to whole foods,” but doing so is “not about putting a big box store into a neighborhood, that wouldn’t be affordable.” In a place where food insecurity is high (meaning low-income, using food stamps etc.) opening an expensive grocery fails to meet people where they are at. Diabetes Advocate, Cara Richards tweeted the following:

Screenshot 2016-07-06 10.01.25

My ears perked up with surprise. Maybe Weaver wasn’t just another researcher blaming health issues on individuals over social conditions. Maybe Weaver was presenting something else entirely… Turned out, she was.

Screenshot 2016-07-06 10.15.42

Weaver’s whole message shifted dramatically in my eyes. Her research wasn’t blame-based, it was solution-based. What she shared next had advocates in the room tearing up. Weaver then told all of us about her own methods of advocacy and what practicing those methods did for one community.

Meet FreshStop, a produce shop on wheels.         bus_loading

The concept of FreshStop was inspired by a subscription box service called Blue Apron that delivers fresh produce with recipe cards for making quick healthy meals at home. Though innovative and convenient for those wanting to improve mealtime at home, Blue Apron is not affordable for the average joe. Weaver recalled her thought process, “How do you get something like Blue Apron into low-income communities?” How do we open up health-forward innovations to those who are routinely denied access? Isn’t that the question we all ought to be asking?

How do we increase the reach of the innovations and programs we advocate for to include those who perhaps need it most?

As a person with diabetes, I want tech advancement to happen because I want living with diabetes to be less of a burden on me. As an advocate, I want those innovations to extend beyond people like me who are privileged enough to have insurance, access to local knowledgable doctors, friends in the diabetes community, access to higher education, and time to self-manage. As an advocate, I know that for our system to be just and fair, all who are interested ought to have access to the medicine and medical equipment.

Weaver is a bold advocate and researcher who is a living example of how to extend innovation beyond the bounds of privilege. Her work reminded me that I am not powerless  within the system that perpetuates injustice and health-disparities.

At MasterLab, through Weaver’s talk among many others’, I learned that giving in to the feeling of powerless is but another way to say no. And, I don’t want to say no. I want to act on that urge I feel to restore justice when witnessing unfairness. I want to give up passivity and try harder.
And I know that the only way I can create change is if I try.
The only way to go beyond the bounds of privilege is to reject the feeling of powerlessness and say YESgiphy

Yes, I can stand up to injustice.

Yes, I can be creative and find solutions that go beyond the bounds of privilege.

Yes, I can be an agent of change.

Yes.