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It’s National Eating Disorders Awareness Week, sponsored by National Eating Disorders Association. Diabetes Advocates, of which I am a member, has partnered with NEDA this year to raise awareness, educate people, and support those in the diabetes community struggling with eating disorders and disturbed eating behaviors. The theme for NEDAwareness Week is Everybody Knows Somebody, and if you’re in the diabetes community, the chances that you know someone who has an eating disorder or struggles with food and body issues are very high.
I have no shortage of things to say about this topic, and have shared extensively in the past (that last link is one of my favorite posts ever), so I gave a lot of thought to what I would write this year. As most people know, I had an eating disorder for almost 20 years. Now that I’m recovered, I’m motivated to help others by raising awareness, and through my professional work, researching and developing innovative ways to help people who are currently struggling, not just with eating disorders, but the whole range of food and body issues that people with diabetes can experience. My latest project, VIAL Project, a social network for people with type 1 and food and body issues, is only the beginning of what I want to do to help people with diabetes make peace with food and their bodies.
While there is a need to understand more about patients’ experience of living with diabetes and food and body issues, and how to effectively treat those issues, I think prevention is equally important. As such, after considering my options for participating in NEDAwareness Week, I decided to write about promoting healthy attitudes about food and body image in people with diabetes. For the most part, these suggestions are for parents of diabetic kids, but at their essence are ideas that can be adapted for people of all ages.
1. The number one thing parents can do is model healthy attitudes about food and body image. This is not just a matter of concealing your dissatisfaction with your body shape or weight. Learn to accept your body, and live that. No, seriously, embody it, LIVE it. Children are smart, and they pick up on things, so if you hate your body, I assure you, they will know it, learn it, and eventually, they will live that. Kids need to see their parents making healthful choices, and respecting and honoring their bodies, which includes not complaining about poochy tummies or asses that jiggle. If you don’t like what you have, make healthful lifestyle changes that will make you feel fantastic, physically, spiritually and emotionally. Don’t eat out of the packaging, when you’re bored, or standing over the kitchen sink, and please, skip the fast food, and make food at home. Behave in a way that reflects all the positive things about food and eating, and establish positive food values in your home. If you need to get some counseling to help you make peace with food and your body, do it. It is better that you spend some time in the therapist’s office, than have your child grow up thinking it’s perfectly normal to be on a diet and hate your body. Kids with diabetes have enough reason to be pissed at their bodies, so help them love themselves, in all its glorious, imperfect inner and outer beauty, by loving your own body.
2. Start having age-appropriate conversations with your children about eating disorders and body acceptance. You can have an age-appropriate conversation about loving and respecting your body with a young child, the same as you would offer an age-appropriate explanation to a young child about how babies are made. Similarly, just as it’s important to have age-appropriate discussions with elementary school children about the dangers of drugs and alcohol, it’s a good idea to have comparable discussions about eating disorders. Don’t wait until they’re in middle school, because by then, you can bet they know kids who are dieting and concerned about weight, just like they’ll know kids who are experimenting with drugs and alcohol. Remember, even though you’re modeling body acceptance for your child (see #1), your child’s friend’s mom might have disturbed eating behaviors and poor body image enough for both her kid and yours, and it will influence your child. You need to get a running start to minimize the damage that other people can do to a child’s self-esteem, body image and nutrition habits. Starting a dialogue about difficult topics when children are young is the best way to ensure that as they get older, they will feel more at ease coming to you if they are having problems. So go have a heart to heart with your D kid.
3. Recruit your diabetes care team to support your goal of having a healthy relationship with food and a positive body image, and maintain ongoing dialogue with your CDE, RD, and endo about diabetes-related behaviors and attitudes. When you’re in the trenches every day, it’s easy to miss behavior and emotional changes that develop slowly over time. They offer objectivity and expertise that can help you identify issues early.
4. People’s feelings about having diabetes change over time. If you’ve had it for years, consider how you felt at diagnosis compared to 1 year in, 5 years in, 10 years in, 20 years in… and on and on. This evolution of feelings about diabetes combines with normal life transitions, and physical, cognitive, social and emotional development over time. And no matter how you long you’ve lived with it, diabetes is frustrating. That part never goes away. All of that, and most people wait until the shit really hits the fan before they’ll even consider getting therapy. Don’t think you have to wait until there’s a problem to meet with a behavioral health specialist. There’s something to be said for developing a relationship with a therapist as a way to support yourself or your child, and as a preventive measure to monitor overall emotional health and adjustment over time. Occasional “check-ups” are an opportunity to review how things have been going, get additional support for your emotional needs, vent frustrations, and problem-solve. Working with someone to solve minor problems could keep those problems from developing into something more significant. If issues such as depression, anxiety, disturbed eating behaviors, or dissatisfaction with body image develop, you will already have someone on your team who knows your history and can help.
5. Participate in activities that promote healthy eating behaviors and positive body image development. There are a range of activities that can fulfill this goal. Send kids to diabetes camp, attend CWD Friends for Life or their regional technology conferences, or attend TCOYD conferences. If there are support groups in your area, attend, or start a group if you can. Do something active. This seems to come naturally for some people, but if you’re like me, and struggle to get motivated to exercise, get creative, and find something that works. In my house, the activity of choice is anything that tires out the dog, so playing in the yard or walking her. Sometimes my husband and I do that together, so it doubles as good quality time. Doing physical activities as a family offers so many benefits. Cooking together is another way to promote a healthy relationship with food. Better yet, grow some food. You don’t need a plot of land. Grow a window herb garden, use what you grow in food you cook, and see how much differently you feel about what you eat. When you do things that are good for you, you feel good about yourself, and when you feel good about yourself, you’re less likely to equate your worth with the number on the scale, or take out your anger on yourself by making unhealthy choices.
Yes, these things take time, effort, consideration, and in some cases, money. That’s the risk you take with prevention though, it’s an investment in the future. I can speak from experience, and share that the cost of these actions is nothing, nothing, compared to the cost of hating your body, having disturbed eating behaviors, or having an eating disorder. I wish I could quantify the toll my illness took on me, my relationships and my family. It’s unfathomable, and the effects linger despite my recovery. All the healthy living I do now can’t completely undo the damage I did to my body, or the guilt and shame I feel for all the pain the people I loved experienced as they watched me self-destruct. Please, do everything you can to support your own positive relationship to food and your body and/or your child’s relationship. Let’s turn Everybody Knows Somebody into Nobody Knows Anybody.
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.
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.
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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