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.

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.

I’ve spent a lot of my life in therapy. Like any kind of relationship, there were therapists I liked more than others. I think most helped me in one way or another, but there are only a couple of therapists who truly made a profound difference in my life. When I was 19, during the summer before I started art school, I was in inpatient treatment for my eating disorder. Upon discharge from the program, the psychiatrist who ran the program introduced me to Pat, the therapist with whom I would have follow-up outpatient therapy. While inpatient, I had been working with another therapist I liked, so I was disappointed about being assigned another, but the doctor thought Pat’s degree in nursing made her a good fit for me since I had diabetes.

I was not an easy patient. I was stubborn, angry, resistant, and clearly didn’t have much insight since I couldn’t see a relationship between my feelings about diabetes and my other problems. I think most therapists would have eventually referred me to someone else, but she stuck with me through all my craziness. She watched my weight fall until I was teetering into anorexia. She welcomed me back the couple of times I strayed from therapy during the eight years we worked together. She patiently worked with me, helping me come to the realization that diabetes was a primary source of the anger that drove my self-destruction. She was the one who excitedly told me about the DCCT, and photocopied a story about it for me to take home. I was only 20 at the time, doing the bare minimum diabetically speaking to keep myself alive and functioning, so I was mystified at her enthusiasm. She loaned me books that I still have because I never returned them. Eventually, I came to recognize that the books represented more than books. They symbolized how she genuinely cared about me, and my unconscious reluctance to return them represented my need for something tangible that represented her acceptance of who I was, and her belief in my ability to overcome my problems. She answered the phone when I called her a few months after I graduated from college, 23-years old, living on 1-pound bags of spice drops, baby carrots, and maybe a third of the insulin I should have been taking, lost, contemplating suicide. She got me admitted to the psychiatric hospital where I started a new medication and made some progress.

Pat's Books

When I was 27, I told her I was going to be working with a family therapist closer to my home and job, because my boyfriend at the time and I were trying to repair our relationship. I’d made a lot of progress, completed college, completed graduate school except for my thesis, and she recognized that, in spite of the work that still lay ahead of me. I don’t remember how exactly we left things, but I always felt like her door was open should I decide I want to return.

I met Jason, I moved to New Jersey, we bought a house, we got married, and I finished my thesis, and graduated with my master’s degree. I continued to struggle to accept my diabetes, and my eating disorder symptoms persisted for over a year into our marriage. I returned to intensive treatment with the same psychiatrist who initially introduced me to Pat, although Pat had moved on, and was working with another organization. A couple of weeks after that round of treatment, I finally relinquished my eating disorder.

About two years ago, I tracked her down. I wanted to tell her about my life – that I was married, I had finally recovered from my eating disorder, I was using an insulin pump, and my diabetes was well-managed. We spoke on the phone for a few minutes, and there was discussion of us meeting for coffee or lunch should I be in the city. I felt weird about it though. I always felt close to her as my therapist, but I didn’t know if I was being intrusive by trying to connect with her. It seemed that maybe if a little more time passed, it wouldn’t feel so weird.

Over the weekend, I was in Southern California, celebrating with George and Team Ninjabetic. I’ve been making horribly slow progress on a book I’ve been reading for over a year now, so I brought the book with me to read on the plane. The book is about therapist self-disclosure in psychotherapy. This is a topic of great interest to me, as you may well imagine. I’m very much out there in many respects online, which is obvious just from this post, and I’ve expressed concerns on many occasions about how that intersects and affects me professionally. This book has given me a lot to consider regarding this issue.

Of interest was one chapter in particular. It was about a therapist who works with eating disordered clients, so it struck a chord. The therapist wrote about her experience running into an old client, and asking her what the client felt had been most helpful about the therapeutic work they had done together. This made me think of Pat, and it made me reflect on our work and the therapeutic relationship we had. It made me think of her self-disclosure, the intentional and unintentional, and the actions and gestures that made me feel connected to her. The times her son was there in the office suite, occupying himself with toy cars or coloring books in a conference room, presumably because there was no childcare. The vacation plans she had, including the stay-cations during which she told me I could still reach her if I really needed to talk. The books on her bookshelf, and the mementos in her office. The hugs she gave me. I reflected on what it was about the work we did that was most salient, what it was that most helped me, and how I should probably make that lunch date with her to tell her. I thought about how it was well past time for me to return those two books.

Late last night, I googled her. I expected to find that she still worked at the University of Pennsylvania’s eating disorder clinic, so it would only be a matter of finding a phone or email. This time we would make concrete plans for lunch, and I would tell her about my work, the blog, the private practice, the advocacy work, everything I do to undo the absence of services that I once desperately needed. I knew she’d understand the value, and appreciate my efforts to transform my personal struggles with diabetes and mental illness into something positive.

Instead, I found an obituary link for Patricia Lipschutz. I wanted it to be a different Patricia, not the one who helped me become who I am. I clicked the link, and I saw the facts that I didn’t want to see. Two years older than my mom, her husband’s name, a son who would have been about the age of the boy I remembered seeing in the office. Patricia Lipschutz from Philadelphia. It was her. She died in June 2009, and I’m only discovering this now.

I don’t know that I can convey how instrumental she was to my eventual recovery. She helped me become a better, healthier person. She stuck with me through some times when everyone else was justifiably done with me. She stuck with me when I felt like I was done with myself. She was the one who helped me understand how my diabetes was connected to my eating disorder, my depression, my anger, my strained relationships. I had only wanted to thank her. As a therapist, I know it feels good to see a client overcome obstacles, and I wanted her to feel good about having helped me work past so many issues. I wanted her to know her work with me mattered, that she helped me change my life. I no longer need the books as evidence of our relationship because I internalized the care she felt for me, transforming it into the care I now have for myself. I just wanted to return her long overdue books.

I am healthy, and that’s how I want others to see and think of me. It’s true that I have diabetes, but I do my best to manage it. It’s true that I have depression, but I take medication so you’d never know that to look at me or talk to me. I grudgingly accept that technically having those diagnoses doesn’t make me the poster child for healthy human beings, however, I believe that my perception of myself as healthy is a better indicator of health than my medical expenditures or diagnostic codes.

I haven’t always thought of myself in this way. In fact, for most of my life, I thought of myself as inherently broken beyond repair. I saw myself as different from the people around me because I had a disease, a disease that plagued my inner world far worse than it could ever plague my body. That plague manifested itself in many unfortunate ways, most notably in the eating disorder I had for so long.

It’s been my personal experience that a lot of people don’t understand eating disorders. Some look at the disease, anorexia, and dismiss it with a flippant, “Those people just need to eat!” Similarly, it makes my heart seize every time I read comments about diabetics who restrict their insulin to lose weight. “Pfft, they just need to take their insulin!” It’s not a matter of “just” doing something so simple though. The eating disorder always serves a purpose, and identifying the purpose is a key to recovery.

My eating disorder served many purposes over the years. It allowed me to punish my body for betraying me by not functioning the way it was supposed to function. It made it easier to push people away from me, and prevent them from knowing the whole me, the diabetic me. Most significantly though, it served as proof that I was broken and couldn’t be fixed. Diabetes wasn’t going anywhere, and certainly confirmed this errant belief about myself, but this more external expression of being ill made it evident that being healthy was outside of the realm of possibilities for me. I needed my eating disorder to maintain my fundamental beliefs about who I was, and as a result of being diagnosed with diabetes, my fundamental belief was that I was sick and there was no cure to fix me.

I can’t tell you when exactly the notion that I might be something other than a sick person first entered my mind, but eventually, thanks to a lot of therapy, I started to conceive of myself as something other than broken. It took time, years really, for this notion to take root and grow, for me to believe that I could be a healthy person even with diabetes. After 18 years of having an eating disorder, the old belief gave way, and today, I see my transformation into someone who is bursting with health as one of my greatest personal accomplishments.

Because I value being healthy, because it hasn’t always been like this, and because it wasn’t really all that long ago that I believed differently, I experience some discomfort looking back at the person I was, and even more anxiety-provoking, it is with great reluctance that I point to it for you to see. I deliberated whether or not to write this, I cringe at the prospect of reminding you that I was so different from what I am today. I cringe at the prospect of you thinking of me as someone less than able to encourage or lead others toward health. I cringe at the prospect of reminding myself how unwell I once was.

However, there are few voices that raise awareness of diabetes and eating disorders, and sadly, even fewer voices of recovery. To my knowledge, there are no statistics about recovery from diabulimia, but I know it’s a persistent illness, similar to all eating disorders. I can only guess that the more severe and longstanding the case, the more the chances of recovery diminish. Thus, as hesitant as I am to raise my hand and remind you of my 18-year history of misusing my insulin, and binging and purging, I feel like doing so might somehow in some way help someone who needs it. Diabulimia is an illness that can feel as irreversible and incurable as diabetes, so knowing someone who truly recovered counts.

Today marks five years of being eating disorder free for me. Five years of recovery doesn’t sound like much compared to almost twenty years of struggling with food and my body, but if I have anything to do with it, five years will become ten, and ten will become twenty, and who know how far I can get now that I’m healthy.