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.

It’s the 3rd annual Diabetes Art Day! When I started Diabetes Art Day, I didn’t expect people to be as receptive as they have been. I figured it would be a one-time event, and crossed my fingers that a few people would participate. Here we are two years later, and it’s an annual event, with participation beyond anything I could have imagined… and I’m a very imaginative person. The first year, there were about 80 participants, last year there were 172 images submitted to the Diabetes Art Day 2011 Gallery, and this year, it looks like a lot of new people are joining.

Diabetes Art Day would be nothing without the DOC, so thank you to all who participate – those who’ve participated in the past, and helped make it what it has become, those who are new to participating, and those who have helped spread the word to get more people involved. With all my heart, I believe that art has the power to heal and connect us, and for the third year in a row, I’m excited to see the healing and connection in action. It brings me great joy, so thank you!

Last year, I started an altered book project for Diabetes Art Day, recycling an old diabetic cookbook, with plans to transform it into something more useful because I think diabetic cookbooks are lame. I didn’t get to work on it as much as I hoped, but here is one page of my book that I did recently. I took the copy from an ad for One Touch strips that kind of annoyed me, and I edited it to reflect my experience with diabetes.

Below that is a painting I finished a couple of days ago. Actually, it might not be finished, but for now, I like it. I’ll look at it for a few days, and maybe I’ll tinker with it some more. I didn’t plan to share a painting for Diabetes Art Day, but after I worked on it on Friday, I decided I would post it because there was something about it that just seemed right.

To see more Diabetes Art Day artwork, please visit the Diabetes Art Day 2012 Gallery.

"I Am", collage in altered diabetic cookbook

"Vasculature", acrylic on canvas

For a long time, the diabetes world has been challenged to agree on a color/symbol. Are we represented by a blue ribbon or a blue circle? Are we represented by a gray or silver ribbon with a red dot or a red drop of blood? Are we represented by red because it’s the color of blood and the ADA? Only a couple of years back, I saw an online poll soliciting suggestions and votes for a color to represent diabetes. There were votes for yellow, some for teal, some for lime green, a few for the rainbow. I shook my head wondering how we were ever going to accomplish what pink has been for breast cancer because, while it has its faults – pink KFC buckets are always a great example of how pink has gone a step too far – the diabetes awareness effort needs to aspire to that level of recognition.

Raising awareness is very much about public relations, and marketing a busted pancreas in November after everyone has been smothered in boobies and drenched in pink during October is not exactly an ideal position to be in. That’s a challenge for us, but it doesn’t change the fact that diabetes needs more love and recognition than it’s historically received, especially because it affects and kills a lot more people.

In an effort to be more widely recognized, over the last year, the DOC has adopted the blue circle, as evidenced by the support of initiatives like Blue Fridays and the Blue Heel Society, but only a year ago, there were still lingering doubts about how the DOC could symbolically represent itself in an easily identifiable way that would raise awareness for diabetes. Last year at the Roche Diabetes Summit, we broke into small groups to discuss issues and strategies relevant to the larger diabetes community, and one of the issues we addressed was how to resolve the color/symbol issue.

I advocated for the blue circle. I’ve been a fan of it since I started participating in World Diabetes Day a few years ago. It’s simple, and it’s different from a ribbon which sets it apart. I like that it represents unity and the community of people affected by diabetes around the world. I like that it has global power because it originates from the International Diabetes Federation. That was only a small part of the Diabetes Summit, but I believed the color/symbol problem was one we could do something about, and I appreciated that Roche structured the time so we could have small group discussions, in person, about this and other issues relevant to the DOC and the larger diabetes community.

The summit ended. I came home. The details of the color/symbol discussion faded, but the overarching idea that we needed to use the blue circle and advocate for its use by the broader community stayed with me. Incubating. Stewing. Percolating. Summer passed. Fall was upon us. Diabetes Awareness Month and World Diabetes Day were fast approaching. I wanted to do something meaningful with the blue circle that allowed for wide participation. Then the idea came to me, the World Diabetes Day Postcard Exchange, an idea that emerged from that opportunity to gather around a table with other diabetes advocates to flesh out the color/symbol problem and how to address it in a way that benefited the entire community.

Except for the first year when I was spazzy excited just to meet so many people from the diabetes social media realm, and frankly, shocked that I was even invited, I think this is the first time I’ve mentioned something substantial here about my participation in the Roche Diabetes Summits. There were a lot of hurt feelings in the DOC that first year, and ever since, there seems to be negative energy about these kinds of events in the online space because of the inclusion of a few and exclusion of many. I get that. I feel fortunate to get invited to some things, but I don’t get invited to everything. Logically, I understand that companies and organizations have valid reasons for inviting some, but not others. I also know being excluded doesn’t feel good, especially when you believe you have something unique and valuable to contribute, and ultimately, I think we all have something to contribute because no one’s experience with diabetes is any more or less valid than another person’s. Understanding that people’s feelings get hurt has made me reluctant to share much about the events I attend, so for the most part, I’ve chosen not to blog about it.

Another reason I haven’t blogged about Roche – or Medtronic – is because nearly everyone else who attends writes a synopsis, and anything I could add would be redundant. I don’t want to be redundant, which has a lot to do with why I only blog on occasion. I figure one of the reasons I don’t get invited to some events is because I don’t blog very often, but most days, I don’t have anything to say that is worth clogging your Google Reader. I don’t just want to be a part of the conversation; I want to add something valuable to the conversation. In the spirit of conversing, I certainly like when people read and offer comments, but that’s more of a bonus than the end goal for me.

Despite my sporadic blogging and practically defunct Twitter account (sorry, I got bored and it’s too much effort to keep up), I was invited to Roche again this year. Like the last three years, you likely won’t get a recap from me because I know my peers will do it better justice than I would. Just because I don’t post a report or blog much at all, doesn’t mean I’m a seat warmer with a familiar face, invited simply because I’ve been invited every year. Thankfully, blogging and tweeting aren’t the only ways to measure activism, success, dedication, and investment in diabetes social media. Blogging gave me a good running start, but I needed to stop just talking about what I wanted to do, and actually do it, so I’ve worked to find ways to combine art and diabetes to help people, build community, and raise awareness, including Diabetes Art Day, the World Diabetes Day Postcard Exchange, as well as multiple offline endeavors like the Diabetes Art Studio I’ll be facilitating at the Children With Diabetes Friends For Life Conference in a couple of weeks.

More and more, I don’t think the “blogger” label applies to me because that’s not my focus. It doesn’t capture what I contribute or describe my role in diabetes advocacy. I enjoy crafting something with language that people want to read, but art is my first love. Art is the universal language, and I think art and other forms of non-verbal creative expression are a grossly untapped resource for the global diabetes community. I’m going to do everything I can to facilitate harnessing the power of art to make a better world for people with diabetes, and attending the Roche Summits helps me do that. When we talk about who brings what to the proverbial table, that is what I bring.

Maybe you’ve been to the Roche Summit, maybe you haven’t, but regardless, if you participated in Diabetes Art Day or the Postcard Exchange, or even if you’ve visited the website or Facebook page of either to see what people have created, you have benefited from the Roche Diabetes Summit because Diabetes Art Day and the Postcard Exchange emerged from it. My hope is that attending the Roche Summit will again lead to collaborative creativity that expresses something about diabetes that can’t be written or said. I have big ideas for my next diabetes art initiative, ideas that require resources I don’t have, ideas that are meant to benefit all of us, and my promise to you is that I’ll use my participation at the Roche Diabetes Summit to promote and develop art initiatives that aren’t just for the short list of attendees, but for everyone.

Last October, I created the World Diabetes Day Postcard Exchange hoping for maybe 100 or 150 participants. There wasn’t anything too fancy about it. People found out thanks to the magic of social media, and emailed their name, address, and details they wanted taken into account when I matched them to a postcard buddy. I entered each participant’s information on a spreadsheet, and manually matched them based on age, type of diabetes, gender, number of years living with diabetes, and relationship to diabetes (self, parent, sibling, spouse, child, friend, aunt, etc.). I flagged emails in my received box so I knew who was entered on the spreadsheet, if I needed to send a follow-up email, if I had emailed their match to them. I’m not very good at planning and organizing, so it was a very dynamic process of refining what I was doing as I went along. As the number of participants increased, I developed a system for responding, sending confirmation emails, sending postcard buddy names and addresses, and following up. In the end, an astonishing 529 people signed up, far beyond my expectations, so it was an absolute miracle that I pulled it off.

Since it was the first year, and far more people joined than I anticipated, it was not without glitches. Not surprisingly, some postcards got lost in the mail, but the bigger problem was people not sending postcards at all. I did my best to rematch people who didn’t receive cards with people who volunteered to make extra cards, but in the weeks after World Diabetes Day when this was proving to be an issue, Jason and I had a long anticipated vacation, I was trying to finish my school work before the semester ended, and we had just gotten a new puppy, so I was completely overwhelmed trying to multitask. I was literally sick to my stomach and losing sleep trying to respond to people who were emailing me to say they still hadn’t received postcards, contact those people who seemingly hadn’t sent postcards, and reach out to anyone who was willing to send extras. There was also understandable disappointment from people who received store-bought postcards in a handmade postcard exchange to which all I could do was apologize because I felt like I should have been clearer that postcards were to be homemade. I wanted everyone to have fun and enjoy it, so I felt personally responsible when that didn’t happen.

I still feel terrible that not everyone was satisfied with their experience, so I’ve been working to make improvements. I hope this will eliminate or at least minimize the things that went wrong last year. There is a dedicated website now, www.wddpe.com, so all the information about joining is in one central, easily navigable location. Instead of having to manually enter everyone’s information onto a spreadsheet from emails, there is an online registration form that automatically puts everything onto a spreadsheet for me. There is an online gallery on the website with public image uploading so everyone who makes or receives a card can post a picture and browse images of others’ postcards.

There are some other improvements I hope to make, but they are contingent on receiving a Seed Grant from Diabetes Hands Foundation. This grant money will go towards stipends for two people to help me communicate with participants. While the manual work of entering data on the spreadsheet is now automated, each person who registers still has to be emailed a registration confirmation, and once everyone is matched to a postcard buddy, the name and address of that person needs to be sent to them. I expect there will be a need to follow up with some people too. I desperately need help with this part of the project, and I would like to be able to compensate the people who help me.

If I receive the grant money, I also plan to promote this project. I’m excited that as of today, 99 people have already registered, as many as I had hoped would join last year, and it’s only June 15th… but we can do better! For as much work as it is on my end, I believe this project has great value to those who join. There is value in the self-expression that goes into making the postcard. There is value in connecting with people. We connect with people in the DOC, but there are so many more people out there, and I want to find a way to reach some of them. Sending mail is old-fashioned, but I think those who received a postcard in the Postcard Exchange in 2011 can attest to the magic of receiving a piece of snail mail, made and mailed by another person in the world who “gets it”. Should I receive the grant money, I will spend some on Facebook advertising. I am already ordering promotional postcards to take the the Children with Diabetes Friends for Life Conference in Orlando in July, and if I receive the grant money, part of it will compensate me for the cost of the postcards.

To win the grant, I need your help though. Please watch the Vimeo video about the project. Please click “Like” (you need a Vimeo account to “Like”, but it’s easy to make an account). Please click “Share” and share the video to Facebook, Twitter, Google+, and Pinterest (you don’t need a Vimeo account to “Share”). Each “Like” and “Share” count as a vote, and if the World Diabetes Day Postcard Exchange video receives enough votes, I will receive the grant money and be better able to grow and improve the project, connecting more people with diabetes with each other, and making it a better overall experience for participants.

Today is the LAST DAY to vote, so please don’t hesitate! “Like” and “Share” today!

There’s an initiative on Facebook called Write Hope on Your Hands for Diabetes. Technically, it’s supposed to be hope for a cure, and while I do hope and believe there will be a cure someday, I have no delusions that I’ll ever see it. It’s better for me to accept that this is how it is, and I can live a fabulous life with diabetes even if I’m never cured. We all do what we need to do to make the best of it, and this is what works for me.

Regardless of whether or not you think you or the diabetic in your life will be cured, living with diabetes today, making the absolute best of it in the here and now, should be important to us all. In that spirit, I’m participating in the Write HOPE on Your Hand project by hoping for healing.

Healing is loving myself with diabetes because loving myself less because of busted beta cells or because I have X, Y or Z complication is not how I want to live my life. Being broken does not mean I am not whole.

Healing is loving my life with diabetes, even though it can be difficult, even though lows and highs screw things up, even though there’s financial hardship. None of those things are more powerful than the gift of joy and love that fills my life.

Healing is recognizing and appreciating the wonderful things that have come into my life because of diabetes. Because I’ve had diabetes for so long, because diabetes has had such a profound effect on who I became, that’s really everything in my life that is meaningful – my husband, my career, and all of my friends.

Healing is accepting that I likely won’t be cured, and knowing my life is no less great or meaningful without it.