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.

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.

1. Health insurance woes and worries

I always feel obligated to preface my complaints about health insurance by saying that I’m grateful to have it. People with diabetes who don’t have health insurance struggle to get their minimum health needs met. Because diabetes is such a costly disease to manage, particularly for people on insulin, many people without health insurance end up cutting corners. I do cut some corners to save money, but I know I’m in a much better position than a lot of other people, and I thank my lucky stars for that.

That being said, I think we can all agree that health insurance is for healthy people, not people with diseases who most need it, so when you have a disease, health insurance is a major source of unlimited grief. Health insurance companies will have you pulling out for hair, inventing curse words, and having complete meltdowns.

I know the customer service rep on the other end of the phone line isn’t responsible for their crappy policies so I do feel terrible that I freak out on them. It’s the board members, CEO’s, CFO’s, the big wigs, the people setting policy that I hate. It’s our economic and political system that coddles those greedy jerkfaces. I hate them all, and I wish awful things on them – hydrogen bombs, plagues, John McClane, zombies with a specific taste for health insurance company executives’ brains. I was going to say aliens that rip out and feast on human hearts, but the poor aliens would starve to death if their sole source of nourishment was health insurance officials…*ba-da-bump*. More fitting would be slow torturous deaths while on the phone with their own customer service departments, begging for coverage for medication, supplies and services they need to live with diabetes. Now that would be karmic retribution.

2. Sweaty lows, nauseous lows, befuddled lows, nocturnal lows, unconscious lows, topless lows…

Having low blood sugar sucks. You can’t process information, you have to stop and wait for your BG to get back to normal, sometimes you’re so hungry you end up overeating and then you feel like crap later because your BG soars. It stops you in your tracks, and in turn, often inconveniences others. It makes you feel helpless and frustrated, and it can be really frightening for people with diabetes and their loved ones. It interrupts anything and everything. Hypoglycemia is a disaster waiting to happen at any given moment. The fact that it can easily kill you brings me to the next thing I hate about diabetes…

3. My pathological fear of dying

I think about dying a lot. It terrifies me because I feel like it follows me around like a shadow, waiting for an opportune moment to swallow me whole. Death is an obvious inevitability for everyone, but knowing that my life expectancy is already shriveled because of diabetes freaks me the heck out. I go to bed at night, hoping I won’t die of a heart attack or hypoglycemia or dead-in-bed syndrome, hoping I’ll wake up in the morning. I worry that every little physical anomaly is an early sign of a heart attack. I hate that it concerns me as much as it does, I hate that I think about it as often as I do, I hate that it scares me to such a great extent. I especially hate that people my age without diabetes have the luxury of looking forward to life’s milestones, while all I can think about is gravestones. I know thinking about it now is a waste of time and energy, but I haven’t figured out how to make peace with it.

4. Food and eating is so complicated

I absolutely despise having to eat when I’m full, but sometimes my BG gets low after meals because I take too much insulin. I hate that when my BG is high, I feel like I shouldn’t eat certain things or shouldn’t eat at all. I hate that eating fun stuff like chocolate or ice cream or cookies is a bad idea for treating low blood sugar, and instead I have to drink juice or eat glucose tabs or hard candy. I hate that diabetes makes it nearly impossible to have a purely joyful experience of eating delicious food because before or after or even between bites, I have to think about how it’s going to affect me, what my BG is, and what my BG might do in response to that food. I hate that I have to play pancreas instead of just savoring what I eat.

5. Thinking about it every other minute

This is not much of an exaggeration. No matter what you’re doing, where you are, how you feel, who you’re with, what occasion it is, what time zone you’re in, what hour of the day it is, how tired you are, how busy you are, how emotionally drained you are, you have to think about it. Where’s my meter? What’s my BG? Do I have enough test strips? How many carbs are in that? How’s that going to affect my BG? Why is my BG low? Why is it high? Why won’t it come down? Why won’t it come up? Did I bolus? Did I over-bolus? Are my basal rates correct? Do I need to do basal testing? Did I refill my prescriptions? Do I have refills on my prescriptions? Do I need to get labwork? Do I have lab slips? Where did I put my lab slips? When is my doctor’s appointment? Did I make that appointment? Do I want to keep seeing that doctor? Are my co-pays going to change? Is my insurance going to change? Am I going to lose my insurance? How am I going to pay for all this stuff? Why is my BG still so high? Did I check my feet? Are those shoes going to cause problems? Why is my vision blurry? Why did my foot fall asleep? Do I have glucose tabs or juice with me? Will they discriminate against me? Will they ask me annoying questions? Will they treat me differently? Should I even tell them I have diabetes? Where should I put my pump? Where should I put my CGM? Can I find a handbag that will hold all my diabetes crap that isn’t as big as a suitcase? Does that dress have pockets? Should I eat dessert? Should I have a glass of wine? Should I adjust my basal rate? Did I reattach my pump? Why the frik is my BG still so high?

Why am I depressed? Oh, maybe it’s because I’m constantly thinking about this crap.

6. Feeling like a burden to everyone

I vaguely recall having an exchange with a parent of a D kid who said they make sure they don’t let on that their child’s diabetes is a burden. I told them their kid knows, and their kid feels guilty. She disagreed. When I was a kid, I felt like a burden to my mom, and I felt guilty for it. I think most adults who grew up with type 1 will say they had a similar experience. Feeling like a burden has eaten away at me for as long as I can remember. Now I’m a burden to my husband. Having diabetes is a burden on the people who love you, no matter what type of diabetes, no matter how old you are, no matter how long you’ve had it. There’s just no way around it. I know people put up with diabetes because they love us. I know having us in their lives with diabetes is better than not having us in their lives, but I despise that it affects them as much as it does. I hate that they worry about us dying, having low or high blood sugar, developing complications, or any of the million things that cause worry for people and families with diabetes. My guilt is irreconcilable.

7. Mental illness

Depression runs in my family, so I can’t fully blame diabetes for this one. However, I do give diabetes a whopping credit for my depression. Diabetes is depressing, diabetes is a burden, and diabetes causes guilt, self-consciousness, anxiety, anger, hesitation, worry, fear, embarrassment, and a range of experiences and emotional states. It takes its toll on people’s psychological wellbeing, and many of us experience depression at some point in our lives.

While depression is common amongst people with diabetes, there are other mental illnesses that as associated with diabetes. Diabetes really complicates our relationships with food and our bodies, and for some, that can lead to an eating disorder. For people with type 1, especially young women, insulin omission is far too common, but for some people with type 2, binge eating disorder is a significant issue. People with mental illnesses characterized by psychosis are often at risk for developing type 2 diabetes because of the medications they take to manage their mental illness.

Mental illness of any kind is difficult. Diabetes of any kind is difficult. Having both is that much more difficult.

8. Sex

Diabetes is with you all the time, so you can close and lock the bedroom door all you want, it’s following you in there. And it’s not just going to sit quietly in the corner, or even wait patiently on the nightstand while you do your thing. It’s getting into bed with you and snuggling up. It might beep, it might vibrate, and not in a helpful kind of way. It might interrupt and turn your lovemaking into a picnic for one of juice boxes and glucose tabs. It will have you wondering if you can keep going for just a few more minutes before you have to tap your partner and tell them the festivities will be ending early. It might even make you pass out, also not in a good way. It will never let your thoughts stay sexy because it will interrupt with worries about your pump site, CGM, BG, or how many carbs were in those edible undies. Basically, diabetes doesn’t want you to have a fulfilling sex life, but don’t stop trying!

9. Complications

Most people talk about The Big 3: retinopathy, nephropathy and neuropathy. Those are definitely scary. After all, who wants to go blind, lose their kidney function, or get their feet chopped off? There’s so much more to it than that though. First, the number one thing that kills us is cardiovascular disease, so I’ve already placed bets that a heart attack or stroke is going to be get me in the end. Beyond those biggies though, there are so many other things that can happen as a result of diabetes.

Diabetes damages the microvascular system, and that means every system, every part of your body is at risk. Most people tend to think pretty exclusively of peripheral neuropathy, but that autonomic neuropathy is nothing to sneeze at. It can damage the heart, any part of your gastro-intestinal tract (diabetic diarrhea anyone?), your sexual function, and whatever else your autonomic nervous system controls.

Then there’s the stuff no one mentions until you’re at the doctor asking about some seemingly oddball problem. I have diabetic mastopathy so I have weird boobs. I’ve had frozen shoulder in both shoulders and both hips, and from what I understand, frozen shoulder can affect any joint. Within the last six months, I was diagnosed with carpal tunnel syndrome, and now I have to wear ugly braces on my wrists when I sleep. So complications can kill or disable you, but they can also adversely affect your quality of life by being a perpetual nuisance.

10. Anger

Do you ever get angry about having diabetes? I spent years taking my anger out on myself because I had so much of it and didn’t know how to constructively cope with it. After lots of therapy, support, and gaining some perspective, I still have an occasional moment, but most of the time, I accept diabetes for what it is, and try to focus on more positive things.

Sometimes though, the anger rises to the surface. The problem with diabetes anger is that there’s no one to yell at, no one to beat up, nothing to blame. Even after you have a monumental breakdown, one that makes you think you’ve gotten all the anger out of your system, the anger never really goes away because diabetes is always there, poking, prodding, instigating. It tends to be unpredictable, uncooperative, incorrigible, unforgiving, and relentless, so even if you feel OK about diabetes right now, just wait because like a fault line, it’s going to slip, and the anger will bubble to the surface yet again.

Wednesday is the fastest hour on the internet for people living with diabetes. People from the DOC gather on twitter for the #dsma chat, facilitated by our own Cherise Shockley. Each week there is a theme, and Cherise asks the questions. It’s always wonderfully dynamic dialogue because we might all have diabetes, or be the parent of a child with diabetes, but the collective experience is varied so the responses are too.

#dsma

In addition to the weekly chat, a couple of weeks ago, Cherise and the crew over at the #dsma website initiated the #dsma blog carnival. Before you’re all like, “Carnival!”, the sad news is that there are no funnel cakes, tilt-a-whirls, or giant teddy bear prizes. The happy news, besides the fact that there are no clowns, is that there’s lots of bloggy goodness. Blog Carnival…

… is your chance to explore a recent DSMA question in more than 140 characters. At the beginning of each month, the blog carnival topic will be announced here on the DSMA blog. Join the carnival by writing a post about the topic of the month on your blog and sharing a link to your entry in the comments section.

The topic for this month’s first ever blog carnival was adapted from the “Fill-in-the-Blanks” #dsma chat on January 26th. To participate in this blog carnival, DOC’ers must complete this statement:

“The most awesome thing I have done in spite of diabetes is . . . . “

I’ve seen several entries, and they are as varied as the people and the responses on twitter. People have traveled the world, become health advocate superstars, had children, and are raising diabetic kids that are healthy and well-adjusted and doing all the great, cool, kid stuff that non-D kids get to do.

Outside of the blogging community, people with type 1 do stuff that seriously boggles my mind, like climbing Mt. Everest, and completing triathlons. These are amazing feats that frankly, defy the logic of diabetes as I know it, and that’s just a small sampling of some of the truly above and beyond things that the pancreatically challenged have done. If I could jot that sort of thing on my resume of life, I’d proudly do so.

I didn’t think I had anything particularly interesting to add, at least nothing that inspired me to sit and write. The last few years aside, for most of my life, I’ve just barely scraped by with my life, and that didn’t feel impressive or even blog-worthy to me. In lieu of contributing, I’ve been appreciating others’ responses to blog carnival, checking out their accomplishments, and waiting to see what the topic for March’s blog carnival would be.

Since blog carnival wasn’t on my blogging agenda, what I really wanted to write about this week, above all else, was National Eating Disorders Awareness Week. It’s an important issue to me because I want others who are struggling to know that recovery is possible, and I think it’s an important issue for the diabetes community, one that deserves a little spotlight now and again.

Naturally, I’m very invested in raising awareness about the practice of insulin omission for weight manipulation. It’s a serious problem, especially amongst women with type 1. From the article, “Identifying and Treating Eating Disorders in Women with Type 1 Diabetes” by Dr. Ann Goebel-Fabbri in Review of Endocrinology:

Polonsky, et al looked at 341 women with type 1 diabetes aged 13 to 60 years and found that 31% reported intentional insulin omission with 8.8% reporting frequent omission. Among this group, rates of insulin omission peaked in late adolescence and early adulthood with 40% of women aged 15 to 30 years reporting intentional omission. Both the fear of weight gain and general diabetes-specific distress independently predicted insulin omission in these women. More than 40% said they were afraid that lower blood glucose would cause them to gain weight and close to 45% believed that appropriate insulin use would cause weight gain, and approximately 36% believed that a target of near-normal blood glucose control would cause them to become fat.

That’s frightening, and those statistics should be alarming to all of us. That being said, eating disorders are not solely the domain of type 1 diabetics. When I did a quick search for research on binge eating disorder (BED) and type 2 diabetes, I didn’t find much other than the suggestion that BED is more prevalent amongst obese type 2 diabetics. Common sense dictates that binge eating is associated with obesity, and obesity is, of course, associated with type 2 diabetes, and BED and diabetes are both associated with depression, so it seems that there’s a lot of room for research, in addition to increased awareness, of this issue also.

As we know, food is a potentially, almost unavoidably troublesome realm for people with diabetes. Our relationship with it is complicated, and there’s a fine line between fastidious diabetes dietary management and an eating disorder. All too often, hunger seems to take a backseat to maintaining BG’s when it comes to what, when and why we eat, so it’s no wonder that many of us have found ourselves struggling to achieve some semblance of a quasi-normal relationship to food and our bodies

In recognition of National Eating Disorders Week, yesterday, I sat down to write about it, but I encountered the problem I seem to have whenever I broach this topic. Moving past the facts and figures and basic information to speak from my heart about this issue is really hard for me.

Even though I’m recovered, I’m still saddled with shame. I always worry about what others think when they learn I had an eating disorder. I bristle with discomfort at the prospect of reminding my friends and family of what was. I have a pending job application, so I’m concerned about the review committee discovering this dark secret. Of course, it’s still there to find, and one wouldn’t have to dig very deep, but it’s my delusion that as long as I keep it off the front page here, it’s less likely to be found. I’m similarly concerned that my pending school application might become a casualty of my disclosure. With all of that clouding my mind, and inhibiting my thought process, the ideas and words don’t flow. So I found myself stuck, unable to follow through with my desire to post something that would raise awareness, and be meaningful and reflective of my personal experience.

Then I had a revelation. I knew how to fill in the blank.

Just like that, my tears are streaming down my face. I remember thinking to myself, “I’ve had an eating disorder for 2 years… 5 years… 10 years… 15 years.” After 15 years, I thought, “It’s going to be 20 years. I’m never going to overcome this, and I’m going to die because if it.” Almost two decades of eating and throwing up, both resenting and coveting food, and hating my body. Oh God, how I hated my body. Not just because I forever thought I was fat, and when I didn’t think I was fat, I was terrified I would gain weight. I hated my body because it had failed me, and I saw it as my enemy. It was diseased and broken and not worth the space it consumed.

So I punished it, eating unimaginable quantities of food in a single sitting. When I wasn’t eating, I was thinking about food I would eat, food I would buy, food I would make, food, food, food. And I almost never thought about diabetes. I took whatever long-acting insulin I was using at the time, and there were some years, when I only took half of that if I even remembered to take it at all. Years I didn’t bolus unless I felt so sick I thought I might go to sleep and never wake up. Years I’d eat big bags of Skittles or M&M’s or cookies or spice drops, call that dinner, and not take a drop of insulin. I’m ashamed of all that, and it’s not even the worst of it. Today, I don’t think about all of that very often, partly because it’s in the past, but also because it overwhelms me with sadness, grief, shame, regret, and more than anything, the desire to undo it.

Sometimes though, when I’m at a restaurant, cutting my bacon cheeseburger in half and splitting my fries into two servings, a meal for now and one to take home for lunch tomorrow, I think about how different my relationship with food is now. When the waitress tries to entice me with dessert, I consider whether or not I’m actually hungry, and unless it’s a special occasion, I pass. “Gosh, that sounds really good, and I love ice cream/cheesecake/brownies/banana pudding/bread pudding/chocolate cake/apple pie/peach cobbler, but I’m full.” It’s a completely different experience, listening to my body, and respecting what it tells me about whether or not I’m hungry. Compared to when I was binging, I eat a tiny fraction of what I used to eat, but I enjoy it exponentially more now.

Diabetes doesn’t make it perfect, as you know. I do have to consume carbs when I’m low, even when I’m not the slightest bit hungry, which I absolutely loathe. I do have to snack to fuel activity and exercise if there’s too much insulin on board. I do have to conscientiously refrain from over-treating lows when I’m hungry. I will make decisions about what to eat based on my BG, especially when it’s high, even if that means foregoing what I’m craving. Like I said, it’s not perfect, but I think it’s as good as it gets, and overall, I’m happy.

The most awesome thing I’ve done in spite of diabetes is I’ve made peace with food and my body.

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.