January 7, 2013

Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project

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I’m 18 months into my doctoral program, and so far so good. It still feels like an eternity until I’ll be done… hoping for 2015, but more likely, I’m guessing 2016. Either way, I’m trying to not focus too much on when I’ll be done with the program, and looking more short-term at completing each assignment and project as they’re due. The big project I will tackle beginning in the fall is my dissertation, but before that, I have to complete a smaller research project, a pilot study, which will be the foundation for my dissertation.

When I decided to return to school, I knew I wanted to study diabetes and art therapy, but was unclear about what direction to go until last spring when I committed to researching diabetes and eating disorders. As someone who is recovered, I have years of experience attesting to lack of knowledge, awareness and sensitivity, insufficient treatment options, and what I have often perceived as an utter disregard among too many healthcare providers for just how easy it is to get all screwed up over food and body image when you have diabetes. I now feel a moral, ethical, personal, and professional obligation to address those problems I experienced as a patient, problems that too many other people with diabetes have also experienced, problems that are preventing many people from overcoming the food and body issues that plague them.

VIAL Project

That brings me to my pilot research project: VIAL Project.

VIAL is an acronym for Voice ~ Insulin ~ Art ~ Life, and VIAL Project combines some of the building blocks of my diabetes advocacy work – social media, creative self-expression, and food and body issues – into a social networking website for people with type 1 diabetes, and food and body issues to share original, arts-based work (art, photography, creative writing, video, etc.), and connect with each other online. Because this is a research project, I will be collecting and analyzing user-submitted content, including all creative expression, posts and comments, to identify themes that emerge. My objective is to increase understanding of website users’ experience: having type 1 diabetes and food and body issues; creating and sharing arts-based work on the website; and using a social media platform to connect with others who have type 1 diabetes and food and body issues.

For the sake of this project, food and body issues cover a range of behaviors and experiences, including: overeating; stress eating; eating to avoid hypoglycemia; insulin omission or manipulation; restricting food; feelings of dissatisfaction, anxiety, anger or depression about one’s body; anxiety about food; binging; purging; use of medications such as diuretics, laxatives or weight loss supplements (not approved by a healthcare provider). Food and body issues can be mild to severe, including: behaviors and feelings connected to food and body image, causing mild to moderate psychological distress, with minimal interference with one’s daily functioning, possibly affecting diabetes management; disordered eating that is more significant, causing some disruption to daily functioning, affecting diabetes management, and posing some health risks; clinical eating disorders, diagnosed by a mental health professional.

If the results of this pilot research are promising, it is my goal to develop my dissertation research based on the results, and continue using the website as a platform for conducting research. The research on diabetes and eating disorders has grown over the years, but there is so much room for new understanding, and a great need for investigation into how to help people.

It is also imperative that more is learned about how to reach and engage people with type 1 and food and body issues because the shame and distress they experience can lead them to isolate themselves, avoid healthcare providers, and be secretive about unhealthy food and diabetes management practices. This is actually one of the primary reasons I wanted to create a website for my research, as opposed to doing more traditional clinical research with participants in person. I hope those people who might be reluctant to participate in research in person, might be more willing to participate online. I hope my research will offer new insight into these areas of need, in addition to shedding light on the qualitative experience of individuals with type 1 who struggle to make peace with their body and food.

Since my data will consist of user-submitted content, without content, I have no data. Without data, I have no research, and without research, I will have to shift the direction of my doctoral work. I am very passionate and invested in studying this topic, and I believe there is great potential for this research to not only help people in the long term through development of interventions, but more immediately, I think a dynamic community that encourages and promotes the use of creativity to cope with the difficulties of having type 1 diabetes and food and body issues could potentially benefit users of the VIAL Project website.

The success of this project depends on people registering and participating on the website, so I’m looking for the DOC’s support and help with their wildly effective viral power. First, if you have type 1, you are at least 13 years old, and you have any food and body issues, as described above, I hope you will register as a user, and participate on the website. If this doesn’t describe you, but you know someone who might be qualified, I hope you will share the project information with them. Lastly, regardless of whether or not you feel like the site might be helpful for you, I hope you will share the information because maybe one of your FB friends, twitter followers, blog readers, or other DOC connections are struggling to some degree, and this is a resource they can use. In addition to the actual project website, VIAL Project also has a presence on Facebook and twitter, which isn’t much to see yet, but in time, I hope they’ll be a reflection of the activity on the website.

I have until late spring to collect my data, which isn’t a generous time frame to build a social network, so I’m reaching out to anyone and everyone I know to put this on the fast track. The more people that register and use the site by late spring, the more data I will have to support my more in-depth dissertation research. The getting-started, getting-people-interacting, and getting-people-making-and-posting-creative-work parts of this project are going to take a big push, but I hope that if you join me in promoting this research, the website will come to life, my research will come to life, and in time, each person who is struggling with type 1 and food and body issues can create the healthful life they deserve.

VIAL Project

VIAL Project: Voice Insulin Art Life

Informed Consent

Like all research, the protection of participants is my priority. If you are interested in joining the site and participating in the project, you are strongly encouraged to carefully review the Terms of Service on the website, which include Informed Consent. By joining the site, you are agreeing to the Terms of Service and providing Informed Consent. By agreeing to the Terms of Service, participants understand that:

• I am volunteering to register and participate on a social media website with a focus on creative expression for people with type 1 diabetes who have disordered eating behavior.

• I will be submitting original, creative works that reflects my experience with diabetes and/or food and body-related issues.

• I am responsible for protecting my identity when submitting public content on the website, including, but not limited to profile photo and username, to the extent that I want to remain anonymous.

• User-submitted content, including posts, comments, profile information, visual artwork, creative writing, audiovisual materials will be used anonymously for purposes of supervision, presentation and/or publication.

• Participating on the website may bring up feelings, thoughts, memories, and physical sensations, either comforting or uncomfortable. I can participate on the website to whatever degree I am comfortable. If I experience significant emotional distress, I know that I can refrain from using the website. If my emotional distress is severe and I feel I am in danger, I have been advised to contact local emergency services in my community.

• This study may or may not benefit me. I may experience increased self-knowledge and personal insight that I may be able to use in my daily life. The results of the study may also help to increase public and professional awareness of the needs and experiences of people with type 1 diabetes who have disordered eating.

• All confidential information collected at registration that is not public will be kept on a password protected computer in the researcher’s possession for possible future use. However, this information will not be used in any future study without communication from the researcher and my electronically submitted consent.

• The researcher/therapist is ethically bound to report, to the appropriate party, any criminal intent or potential harm to self.

• I may choose to withdraw from the study at any time with no negative consequences.

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11 Responses to “Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project”

  1. Rose Edward says:

    Finally someone who looks at both eating disorders AND Type 1 Diabetes! I have a type 1 diabetic in my family who is also a compulsive overeater. Dangerous combo. Balance is much harder than the roller coaster. I will happily pass this information on. Thank You for doing this!!!!!!!!!!!!!

    • Brenda says:

      I have an 11yr old T1 and adult T2 under my care in the household. I find as their caregiver, I think I am the one developing an eating disorder. Not sure, but I have really begun to dislike food, cooking, shopping is a horror. As an artist and mom of a T1, I am thrilled with your project and will be certain to follow it. Does your project vary in age groups, or Just age 13?

  2. Thank you, Lee Ann, for doing this. I think it’s a very important area of diabetes care that is drastically under-served.

  3. Belinda says:

    What a great idea! I have been a T1 for 7 years now and had serious weight issues that led me to undergo a gastric bypass 2 years ago. Now the struggle is how to deal with high & low BG when you have a reduced stomach and can’t necessarily take in everything as you used to. Hope I can help!

  4. Norma Holly Eslick says:

    My biggest problem with food is at night before I go to bed. I usually have a glass or 2 of wine and something to go with it like cheese crackers or cheese and grapes or No Sugar Ice Cream. I have a fear of getting low blood sugar at night or in the morning so I make sure I always eat something. My problem is finding a balance between too much and too little. My blood sugar STILL is either too high or too low in the morning. Doesn’t matter if I measure the amounts or not, there is no correlation. I can eat a lot more on some nights and it’s low in the morning and I can eat just a little on some nights and it’s high the next morning. I do 5 or 6 blood sugar checks every day but there is very little rhyme or reason to where my blood sugar levels end up. My other gripe is that doctors seem to be utterly clueless about how difficult it is to keep bloodsugar under “control”. They just want to chalk it up to “non-compliance” on the patient’s part. I guess that makes their job a lot easier. I’m almost 60 years old, I’ve been diabetic since I was 8, and I’m tired of it. We’re paying doctors good money and all they can do is say, You need to lower your A1Cs. Thanks, doc.

  5. [...] Butter Compartment Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project Lee Ann Thill, creator of Diabetes Art Day and the World Diabetes Day Postcard exchange, shares her [...]

  6. Cheryl Pellett says:

    How do I follow your blog? Am I overlooking something? My daughter has Type 1 and I really enjoy reading your post. Thanks.

  7. shannon says:

    what a tremendous project! though i cannot participate directly, i wish you the best in this endeavor, as i think it will be very helpful to so many!

  8. Sarah says:

    Thrilled to find your site and to hear about your project. I am…well, yes–exactly what you’re looking for. Type 1 for 19 years, have many, many issues when it comes to food, eating, body image, etc. And yes, my insulin lives next to the butter too.

  9. [...] the issue with creation of a new website project called VIAL (Voice, Insulin, Art, & Life). She describes the VIAL Project at her blog, The Butter Compartment. (We also wrote about it, [...]

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