January 7, 2013

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

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.

June 30, 2011

Gearing Up for Glitter

Filed under: Creative Expression,Helpful Resources — Tags: , — Lee Ann @ 3:07 pm

Last September 1st, the DOC rallied in an art-making frenzy that was bigger and better than anything I could have hoped for the first ever Diabetes Art Day. Whether you were an avid fan and participant, reluctantly partook because of peer pressure, sat on the sidelines, or this is the first you’re hearing about such an event, I’m hoping for lots of participation again this year as we take our collective creativity to the next level of awesomeness.

Last year, I regretted not having a single go-to place for the art and information about it, so once the glitter had settled, I promptly registered for a proper website dedicated solely to sharing the creative genius of the DOC, the official Diabetes Art Day website. The pathetically blank site sat all these months because I wasn’t really sure how to make it functional. Until this week. It’s now live, more or less functional as far as I can tell, and filled with glorious art from 2010. My web-designing skills are fairly rudimentary, but I think I found plug-ins and widgets that will allow users to easily upload photos of their artwork.

As was the case last year, I hope you will share your artwork come Diabetes Art Day on your blogs, community websites, Facebook, Twitter and anywhere else that you like. The Diabetes Art Day website is simply a central location that will hopefully make it easier to find others’ submissions. Personally, I thought the best part of Diabetes Art Day 2010 was going to different websites to see the work and read about each artist’s experience making it, but from this point forward, it will also be pretty groovy to see the mass collection in one central place.

If you would like to include the art you made last year for Diabetes Art Day in the 2010 Gallery, please feel free to upload it, along with a short description (name, connection to diabetes, title of work, etc.). If you have any technical issues, please let me know because I’d like to get the kinks worked out before September 1st. I will enable uploads for the 2011 Gallery as it gets closer. I also encourage you to ‘like’ Diabetes Art Day on Facebook as a way to get updates, reminders, and inspiration. While we still have two months to go, you’re welcome to use the Diabetes Art Day image to start spreading the word about our 2nd annual Diabetes Art Day.

Lastly, I want to remind you that Diabetes Art Day is nothing without you and your willingness to do something a little out of the ordinary. I’m here to help facilitate it and serve as a resource if you’re interested in ideas or need advice regarding art materials or processes, but this is a community project whose success is as great as the love and energy put into it. I know the DOC is brimming with love and energy so please help me make this year’s Diabetes Art Day spectacular!

December 16, 2010

Invitation to Start the New Year, Diabetes Art Style

Do you love hanging out with other type 1′s and type 1 families? If you do, and you live in the Philadelphia area, there’s an awesome support group organized by our very own Bennet from YDMV and theBetes:Now. Children, teens and adults with type 1 and their families are welcome so come hang out and have fun – and make art with me! – on January 22nd in Bryn Athyn, PA. Let’s start the New Year by stretching our creativity in preparation for Diabetes Art Day 2011!





October 8, 2010

PSA: MIAW & NDSD





The title of today’s blog isn’t just alphabet soup. I couldn’t think of a succinct title, so I went with acronyms: Public Service Announcement for Mental Illness Awareness Week and National Depression Screening Day. It would have been better if I had posted this Thursday since there were actually screening centers all over the country, but this is going to have to be a case of better late than never. In lieu of visiting a screening center, there are depression assessments online that I encourage you to take if you suspect you might be experiencing depression. Only a qualified doctor or therapist can diagnose and treat depression, but symptoms include, but are not limited to: change in appetite in either direction, feelings of hopelessness, loss of interest in things that used to bring you pleasure, fatigue, changes in sleeping patterns in either direction, crying a lot, isolating yourself from friends and family, thoughts of hurting yourself or not wanting to live anymore.

For both MIAW and NDSD, I actually want to bring attention to an organization called Bring Change 2 Mind, that JaimieH told me about last week. From the website:

BringChange2Mind.org is a not-for-profit organization created by Glenn Close, the Child and Adolescent Bipolar Foundation (CABF), Fountain House, and Garen and Shari Staglin of IMHRO (International Mental Health Research Organization).

The idea of a national anti-stigma campaign was born of a partnership between Glenn Close and Fountain House, where Glenn volunteered in order to learn about mental illness, which both her sister and nephew suffer from.

This is the first effort of this magnitude in U.S. history. Ron Howard generously donated his time in directing our first PSA that features Glenn Close and her sister, Jessie Close. John Mayer generously donated his song, Say, which serves as an anthem for this movement. The spot was created and produced by New York-based advertising agency, the watsons.

This is a very cool organization, and I hope you’ll check out the website, and watch some of the videos there. Speaking from experience, it’s not easy to put yourself out there and say, “Yes, I have a mental illness,” so I thank everyone who participated in the video project for their willingness to “out” themselves like that. I think the stigma associated with mental illness is one of the biggest hurdles that stop people from seeking treatment for mental illness, so I greatly appreciate efforts to put an end to the stigma.

I’ve been very open about my experience with mental illness – depression, including the suicide attempt that finally brought me into treatment 21 years ago, and the eating disorder I had for 18 years. As I’ve said before, as recently as last week, it makes me kind of squirm with uneasiness to talk about the problems I’ve had. I worry that people will think I’m less credible, less qualified, more fragile. I worry people will think I’m not a good therapist, I have poor judgment, or that I’m somehow weak. I wish I could say that I’m above the stigma, and that it doesn’t affect me. It does, probably more often than I’m even aware. While no one has ever said anything to me directly, I’m confident there are colleagues who think less of me. I’m sure there are people who wouldn’t want me as their therapist because I’ve revealed the fissures in my pyche. I ponder these things often, very often.

However, I have faith that the good I can do by speaking out about my experience outweighs the risks. My goal is to help people. I think that people are more likely to seek help if they know that they can be helped, and I think knowing that someone else is living well and managing depression, or knowing that someone else recovered from an eating disorder can be the push some people need to pursue treatment, stick with treatment, and achieve their own treatment goals. I’m not saying everyone has to advertise or post their mental health histories online, but don’t let stigma keep you from getting the help that’s available. I like to think I represent a good outcome of being humble enough to recognize my problems were more than I could manage alone, and that I needed help. I can also attest to the most tragic of outcomes that come from not seeking help because mental illness is not solved by just pulling yourself up by your bootstraps.

There’s nothing wrong with being mentally ill just like there’s nothing wrong with having asthma, or being allergic to pollen… or having diabetes. It can be treated and managed, so learn about it and get help if you need it. Don’t let shame or pride stand in your way of overcoming problems that can be treated.

December 7, 2009

The Results: Click & Comment for a Cause

I started November, American Diabetes Month, saying I wanted to celebrate the month by donating to two of my favorite diabetes charities. The Behavioral Diabetes Institute and Diabetes Hands Foundation are small relative to the big diabetes organizations, but I think the work they do is no less valuable. I have directly benefited from their work in many ways, and it’s important to me that I support them because I want them to flourish so they can have a positive impact on others who can benefit from their work.

I got all my inspiration from Rachel at Tales of My 30′s, so I want to give her props. Following her lead, I decided to donate a quarter to the Behavioral Diabetes Institute for every comment left on the blog during the month of November. Yesterday, I finally sat and calculated, omitting pingbacks and comments I left in response to others’ comments. The grand total came to 283 comments, which means I am donating $70.75 to BDI.

Similarly, I said I would donate a quarter to Diabetes Hands Foundation for every page hit I got on World Diabetes Day. I actually tallied this and posted it a day after the fact, but it was just a footnote at the end of a post. Since I’m posting about the fundraising total for BDI today, I wanted to re-post the total for DHF in case you missed it and were wondering. On November 14th, there were 234 page hits which means I’m donating $58.50 to DHF.

Because it’s the holidays and money is tight this time of year, it will be later in December or early January before I can actually donate the money, which I felt like I should disclose, but once our Christmas spending is done, I will be making both donations. It’s not a ton of money, but it’s something extra that I believe will be put to good use by a couple of diabetes organizations that I hope to see grow and continue to help people with diabetes, and in turn, help the the entire diabetes community.

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I know there’s less blog reading on the weekends because what better place to read blogs than at work during the week (I won’t tell on you, I swear!), so in case you missed Saturday’s post, please check it out. While I was not in good spirits on Friday, eventually, my mood improved, and I felt inspired to do a little something for the people who always help when I’m feeling blue. Psst… that’s you!

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