There’s an online petition going around advocating for changing the names of type 1 and type 2 to something that is less generic. In the past, I think I might have supported this initiative. I can appreciate the argument that has been outlined by its creators, a couple of moms of kids with type 1, and there could be potential benefits to a name change. The problem is that it would come at a steep cost to the diabetes community, and I’m not inclined to think it would effectively resolve the problems the creators think it will.

When the petition popped up on my radar, my immediate gut reaction was uneasiness. Once I had collected my thoughts about this, I shared my opinion more privately with some people in the DOC, but since this petition seems to have some traction, I feel compelled to offer my thoughts on the matter for consideration more publicly. Not that too many folks visit my blog much since I don’t post often, but this is still my place to put stuff out there.

First, let’s review the nomenclature history. For most of the time that diabetes has been recognized as a disease (think Ancient Greece or thereabouts), it’s been known simply as diabetes mellitus. When it manifested in children, it progressed much more quickly than it did in adults, but it was thought to be one condition, and calling it childhood or juvenile onset and maturity or adult onset was considered adequate. In 1980, the World Health Organization changed the names to insulin dependent diabetes mellitus (IDDM) and non-insulin dependent mellitus (NIDDM).

The IDDM and NIDDM nomenclature obviously presented a lot of problems because some people with NIDDM took insulin. In 1997, they acknowledged the problem with the 1980 name change, and in the interest of not attaching new descriptive names that would ultimately be misnomers like the previous names, they went with something that seemed generic and symbolic rather than descriptive: type 1 and type 2. It’s not perfect, but it eliminated some of the problems of the previous nomenclature… sort of.

It would have been just lovely if they had understood diabetes better when they changed the names from juvenile and adult diabetes to IDDM and NIDDM back in 1980, and assigned names that more accurately captured the pathogenesis, but they didn’t do that because they didn’t really understand the differences, or that there even was a fundamental difference. They know a heck of a lot more now, but the bottom line is that they still have a lot of work to do to understand the pathogenesis of either.

The problem with not really understanding the diseases is that a name you assign today might be proven to be a misnomer with future research findings. I’ve heard some people suggest that type 1 be called auto-immune diabetes, or something to that effect, and I’d made the suggestion myself back when I thought the name change was a good idea. However, did you know there’s research evidence that there is an auto-immune reaction involved in the development of type 2 diabetes? My point is that coming up with descriptive names, as opposed to the current generic, symbolic names is highly problematic when you have diseases that need to be further researched, which have some differences, but also have a lot of similarities.

They’ve made all these name changes, which might have seemed very clear and worth the effort at the time they were made, much like some people think a name change is worth the effort now, and what has that done? I’ve had the same disease since 1978, and it’s had three names over the years. Never mind that it was changed to type 1 diabetes 16 years ago, it still has three names. Most people don’t know the difference, and don’t really give a shit unless it directly affects them. It’s not just laypeople either. Having worked in healthcare settings, I’ve seen and heard doctors and nurses who don’t specialize in diabetes care use the old names. Patients with the disease still use the old names, probably because their healthcare provider used the wrong name, or if they’ve had it for many years, they’re just using the terminology that was current when they were diagnosed. The name issue at this moment, without adding more names to the mix, is still a ginormous clusterfuck.

With all due respect, if anyone thinks a name change is going to mean they’d eventually catch a break and not have to explain, they haven’t really thought this through, or they haven’t had diabetes long enough to appreciate how this history of name changing has played out and affects people over time. Think of the 92 years that insulin has been around as a treatment, but there are plenty of folks out there who think it’s a cure. That very basic level of knowledge is still misunderstood. Don’t overestimate public health literacy because no one has figured out how to conquer that mountain on any health-related issue. I will be explaining what kind of diabetes I have for the rest of my days. You will be explaining it for the rest of your days. I’d bet money that all the children with diabetes will be explaining it for the rest of their days too.

So if we don’t change the names, what can we do?

I think the answer that will lead to effective solutions is a change in mindset, and increased tolerance for the reality that people without diabetes, or people whose experience with it and understanding of it has been different than yours, shouldn’t be held to the same standards as we hold for ourselves regarding knowledge. Basically, cut people some slack, and be willing to explain.

Yes, it’s frustrating when people don’t understand and make comments based on limited knowledge and experience. I get that. It tests my patience some days just like it tests yours. I try to be the informed ambassador for diabetes when I have the opportunity, but sometimes I fuck up because I’m tired of explaining. I complain to others, I post an occasional rant, I make snarky jokes to cope with my frustration. However, I know in my heart that the anger that underlies the frustration isn’t that other people do not have the knowledge or experience. The anger is because defective genes, some unknown environmental trigger, and crappy luck caused me to get diabetes. I’m angry at my body, my beta cells, my pancreas, my genes, the universe that smote me with this bullshit disease. I’m angry because I have to be a walking encyclopedia about diabetes to live, and they don’t have that same burden. I’m not angry at them for not knowing; I’m angry because I have to know. It’s a subtle, but very important differentiation.

While I understand the motivation behind this campaign to change the names, instead of putting effort into it, I’d like to suggest that we put resources into projects and initiatives that will have a more discernible, immediate impact, efforts that we can all join to support ourselves and each other, rather than efforts that will divide the community. There are far too many unmet needs in the worldwide diabetes community to get bogged down in nomenclature, so instead of separating, let’s unite and rise up. I understand the strong emotions that this issue has elicited for some, and I recognize that not all minds can be changed, but I hope some people will reconsider and reinvest their energies. We are a big community that can accomplish a lot, so rather than divide into separate factions, let’s support each other’s goals, find our common ground, and identify and accomplish goals as the diabetes community.

Edit (4/19/13)
Here are some additional links about the name change issue that I highly recommend:
Association by Bob at T Minus Two
I have a disease – it’s called diabetes by Courtney at Ride to Remedy
The Kerfuffle Over New Names for Type 1 and Type 2 Diabetes by Amy at DiabetesMine
Let’s Come Out of the Diabetes Cave Together by Manny at the Diabetes Hands Foundation Blog

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.

I keep thinking about my father’s suicide, partly because of Christmas. I spent Christmas with him when I was a kid during my elementary school years and into my early adolescence. I have good memories of Christmas with him. Although now that I’m almost 40, he’s dead, and I’ve had a lot of time and distance to consider things in retrospect, I’ve been having this underlying sense of anger, like it’s leaking out the cracks of my good memories, not exactly ruining them, but definitely leaving a lingering sourness.

Of course, the main reason he’s on my mind is because the anniversary of his death is in three weeks. I want to go to Texas, but I’m not sure I can work it out. I went for the one year anniversary, but I didn’t go last year. I intended to, but I had some kind of cold type illness. Driving solo, halfway across the country and back, is therapeutic, but tedious, and at the last minute, I decided I wasn’t feeling up to it.

I go back and forth in my mind about should I go or shouldn’t I. When I go, I visit the grave, I take a flower arrangement, I remember the funeral, and how if I’d only come to Texas two days earlier, maybe he’d still be alive. If only, if only, if only. When I go to the grave, I always have this sense that I should talk to him. I certainly like the idea that he can hear me and is getting something from what I say, but you know I’m not a spiritual kind of person, so I don’t really think anyone or anything is listening, and I feel like a dipshit. I might as well go talk to a tree or a plate of hot wings. I never have a sense of resolution, and I suppose resolution isn’t possible. As people told me in the days and weeks that followed his death, there is no going back to what I knew. It’s a new normal that happens to be an open-ended void of inconclusion, which apparently isn’t a word, but should be.

Then there’s all the recent gun talk, so that’s got me thinking about him. It rubs me the wrong way when people talk about mentally ill people being violent towards others as if that’s the norm. Obviously and tragically, that happens, but people with mental illness are infinitely more likely to be violent towards themselves. I know it’s morbid, but I’m a visual person, and my mind reflexively fills with images of him shooting himself, a bullet in his head, blood all over his shower, him slumped in a heap. He lived for a couple of hours. He called 911 right before he did it so the police would come. Then the ambulance came, they took him to the hospital, they tried to save him.

He loved guns. He had a bunch of them. He hunted. He probably belonged to the NRA, or at least supported them. Then he used one to kill himself. It was a small gun, a handgun. I don’t know if it was a pistol. Can pistols and handguns be the same thing? I don’t know. I don’t need to know, so if you know, don’t tell me. It wasn’t registered. I think it was old, or at least old enough that it was acquired before registering guns was a thing. My aunt has it. She wanted it, like a souvenir. That seems weird to me, but under the circumstances, I accept it. She’s a lunatic gun freak who thinks everyone should have an arsenal. I hate guns. I think they’re stupid. I don’t understand anyone’s obsession with guns and weapons. Collect cuckoo clocks. Collect model cars. Collect fucking paperweights. I wish guns didn’t exist.

My father actually did collect model cars, but that wasn’t satisfying enough to give up his fondness for guns. He was a little OCD about collecting NASCAR shit. We have multiple boxes of everything from limited edition NASCAR model cars that are supposedly worth some kind of money to a collection of empty Kellogg’s cereal boxes with NASCAR people on them that as far as we’ve been able to figure out, aren’t worth the cereal that once filled them. All of his stuff tortures me. It takes up space, so much of it has no meaning to me other than that it meant something to him, and because I had such a negligible connection to him for most of the last 25 years of his life, it’s all I have. It makes me mad too. I can’t think about all his hobbies and interests, and all the time and money he devoted to his hobbies – cars, flying airplanes, scuba diving, guns, fishing and boats – without being reminded of his choice to spend his time and money on that shit instead of having some kind of better, more meaningful relationship with me.

I’m reluctant to post about any of this. It’s depressing. No one wants to talk about it with me, no one knows what to say, and if I talk about it, then people feel obligated to say or do something. Plus, I feel like a whiner. I want to talk about it occasionally, like now, but there isn’t anyone I want to talk to. I don’t want to whine to people I know. I don’t want to talk to people I don’t know, like on a forum for survivors of suicide. I tried that, and it wasn’t for me. As I mentioned, talking to his grave isn’t the answer, although that won’t stop me from saying something the next time I’m there, mostly just to confirm that it doesn’t work. I started to post on Facebook, and I decided I’d regret posting. So I’m posting here. I never post here anymore, so I don’t think anyone reads. That’s consoling I guess… I don’t fucking know.

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