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

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.

Today is November 1st, the first day of Diabetes Awareness Month, and two weeks until World Diabetes Day on November 14th. Today is also T1Day, a JDRF initiative to raise awareness about type 1 diabetes. They want everyone to give the finger to type 1 diabetes, a funny, albeit sassy message, but one I can endorse since I’m chock full of inappropriateness. Jason generously served as my photographer, and snapped this picture of me giving type 1 the finger (disclosure: JDRF contacted me, and sent me the foam finger).

Also in support of this initiative, people have been posting their three words to tell the world about type 1 diabetes, using #T1Din3 on twitter. After two fabulously successful years of Diabetes Art Day, and now all the fun I’m having with the World Diabetes Day Postcard Exchange, here are my 3 words:

Creativity – Embrace – Life

In some Diabetes Awareness Month non-news, I’ve spent the last two nights trying to do something blue to my hair. I got the idea from Auntly H at Beyond Your Peripheral Vision. I saw she was ordering a blue wig because she figured that was more likely to garner attention and questions than simply wearing blue clothes. I liked where she was going with that, so yesterday I picked up some blue hair dye while getting some bags of Halloween candy to restock the stash I had bought weeks ago, and we’d managed to do some major damage to… but that’s beside the point.

Last night I bleached the bottom 3 inches of several clumps of hair before Jason played hairdresser (photographer, hairdresser, IT support… what can’t my husband do?), and slathered blue goo in my hair. I waited, I rinsed, I washed, I dried, and I was sorely disappointed with the way-too-subtle results. Tonight I was determined to make my blah-blue into true-blue, so again, with Jason’s assistance, I slathered more blue goo on my hair, waited even longer, rinsed, washed, dried, and was aggravated to still have nothing more than a very subtle blue tint, which you can sort of make out in the photo. I’m not giving up on having blue hair to raise a little diabetes awareness, but this is clearly a work in progress, so stay tuned.

I know, I’m a little late to the Diabetes Blog Week game here. I had several ideas for what I wanted to write in response to Monday’s Diabetes Blog Week prompt about appreciating our differences, but my intentions got derailed. Late Sunday and most of Monday, I was in tears over Mother’s Day, a reaction that really took me off guard. In recent years, I’ve definitely had some ambivalence about it, but this year, my emotional response was off the charts. It’s a complicated issue though so maybe I’ll write about it another day. Also, I’m sitting in a restaurant having lunch right now, and if I start writing about it I’ll end up weeping into my club salad, which would just be embarrassing.

On Tuesday, I figured I’d pull myself together, and write my letter for prompt #2 of Diabetes Blog Week. However yesterday, after several days of an especially chaotic and ugly ride on the ol’ glucoaster, I had a full-on blubbering meltdown over diabetes while recovering from a 45mg/dL. You know that scene at the end of Scarface? It was the emotional equivalent of that, an it’s-not-fair, I’m-tired-of-this-crap, why-the-frak-did-I-ever-think-blogging-or-the-DOC-or-glitter-or-anything-could-make-this-stupid-disease-better, I-don’t-want-to-do-this-bullpoop-blood-sugar-battle-for-the-rest-of-my-life, frik-you-diabetes-and-the-mother-frakking-urine-test-strip-and-NPH-bottle-you-rode-in-on implosion of monumental proportions. If you’re thinking, “Lee Ann is being polite, and offering the censored version,” you would be correct. I tried to funnel the emotional tsunami into a blog post, but it was nonsensical gibberish, and frankly, a massive downer.

So here we are, the third day of Diabetes Blog Week, and after the last few craptastic days, I’m going to see if I can belatedly get on board. Had I been on time, you’d think I was an impostor anyway. Maybe a little diabetes blooper lawlz action is just what I need.

There’s ample opportunity to lament the heartache that diabetes can be (see paragraph 1 and 2), so when diabetes offers up the chance to laugh, running with it is imperative to maintaining the delicate façade of sanity. Funny diabetes moments tend to be more funny after-the-fact than in-the-moment, but regardless, they’re the saving grace, the moments that make this disease, and life with it, bearable.

As I pondered humorous diabetes moments, one was more of a general occurrence than a specific incident. Despite my love of donning sundresses when it’s hot, since I started using an insulin pump, I wear dresses much less frequently than I once did. I know there are all kinds of devices to keep the plastic pancreas in place, but I never feel like they work as well as I’d like. Lots of ladies are all about nestling it between the girls, but regardless of what bra I try or how I position my pump, my bosom isn’t ample enough to do such things without it being glaringly obvious that something weird is going on in my top.

Without that as a viable option, when I wear a dress I have to use something that allows me to wear my pump on my thigh. I’ve tried pump garters, and I’ve tried the Thigh Thing. When I wear stockings, I’ve strung my pump inside and down my leg, and when I wear stay-up thigh-highs, I’ve placed my pump inside the elastic band. I’ve even slipped my pump into a baby sock that I’ve strategically safety-pinned to the crotch of my undies. Granted, I don’t think I did that more than twice before deciding I didn’t care for that thing dangling between my legs (more power to men who put up with that all the time…). No matter what I’ve used though, it invariably means that when my pump talks to me, my crotch beeps, and when I need to get to my pump, there’s an awkward, squirmy search and rescue mission. It’s not exactly a blooper, but you can’t say it lacks comedic value.

Most of my more memorable and funny moments have occurred as a result of low blood sugar. When I was 25, my significant other at that time, John, and I went to see Saving Private Ryan at the movie theater. Considering that poking my finger and sticking needles in my body is status quo, you’d think I would have a higher tolerance for blood and such in movies or on TV. As it turns out though, I am notoriously squeamish. In that respect, Saving Private Ryan was not the best movie for me to see, but I like movies about history and war, and I think that Tom Hanks fellow is a pretty good actor.

The opening scene with the beach landing is obviously pretty gory, and my low tolerance for blood made that unsettling on multiple levels. Many obliterated appendages, dead bodies, and much spilled blood later, and I started to feel kind of nauseous. About a quarter or a third of the way into the movie, during the scene when they cross the field as Germans are shooting at them (that probably sounds like the entire movie in a nutshell, but if you’ve seen it, you know which scene I mean), and the one character gets shot, in the abdomen I believe, I was feeling really sick, dizzy and potentially vomitous.

Then I blacked out, but only for a few moments because the next thing I knew, John had scooped me up, and was carrying me up the ramp, into the lobby, yelling at the bewildered teens behind the counter to get me some sugar. Those kids came to life like no one’s business, scrambling as John barked instructions at them. I don’t remember exactly what they gave me, but I think there was some kind of gummy candy, Swedish Fish maybe, and possibly some juice or regular soda.

Once I was more with it again, we returned to our seats to watch the rest of the movie. It wasn’t until John received the video as a gift from his parents the next Christmas that we got to see the movie in its entirety, minus seizures, black-outs and Swedish Fish. We did always chuckle imagining that our fellow movie patrons probably thought I was OD’ing on heroin or something.

Public displays of hypoglycemia (PDH?) can be ripe with entertainment value, after the fact of course, but more private moments aren’t immune from ensuing hilarity. Last summer on a sunny weekend afternoon, Jason and I were spending a low-key day at home. I started to feel low, and don’t recall now whether or not I checked my BG to confirm, but I remember going into the kitchen to get a shot glass of blueberry juice. I drank it and sat down on the sofa, waiting to feel better. The next thing I remember, I was sitting on the sofa, trying to figure out why I was topless, asking Jason what happened to my shirt.

“You don’t remember?” he asked incredulously.

Apparently I had interacted and cooperated with him, so he was surprised that I had zero recollection of what had transpired. The short version is that my low blood sugar got worse, and I suppose the memory part of brain was more deprived of sugar than the rest of my brain. Jason had me drink at least a couple more glasses of juice, and because it was a really sweaty low, he thoughtfully removed my tank top because it was drenched. He knew that once I recovered, I would get those post-low bone-freezing chills, and a soaking wet shirt was only going to make that worse.

The unfortunate thing about these entertaining stories of low blood sugar is that the person with me tends to tell it far better than I can since they were the more lucid participant, but you’ll have to accept my vague versions. While I haven’t fully extracted myself from the bleak place I was at with diabetes yesterday, and I know tearful moments are an inevitability, at least I know diabetes has a sense of humor, and it will deliver some laughs now and again.

Last night, I caught that there was a discussion about diaTribe’s interview of the new CEO of JDRF, Jeff Brewer, on TuDiabetes. Mention of a forum discussion on Children With Diabetes (it has since been locked) that had gotten out of hand made me wonder what was so upsetting about the interview, so off I went to read it. As always, I encourage you to read it yourself if you haven’t, but in essence, Mr. Brewer said that JDRF is broadening its vision.

Personally, I was rather delighted by the interview. I’ve had two primary gripes about JDRF for years. First, I felt like they disregarded adults with T1. It’s a discussion I’ve had with countless people on multiple websites during the last 6 or 7 years. During my 20’s when I was struggling to figure out how to stop feeling so resentful about diabetes, I had tried calling my local JDF chapters (this was before they added the R) on several occasions, looking for something, anything that would resemble support. I got nothing. If anyone even returned the messages I left on their voicemail, I was lucky. I felt completely alone with diabetes, was quite desperate to find support and connection, and the most obvious source of support in my eyes couldn’t be bothered with me. Thus, Mr. Brewer’s statements about engaging with and supporting adults with T1 meant a lot to me, and I’m excited about what this means for the T1 community.

Jeffrey Brewer

My second big gripe has been that JDRF has always been so focused on curing T1 that they seemed to completely forget about those of us who have been trudging along trying to live with it. I actually have complicated feelings about a cure, but generally speaking, I know a cure would be a wonderful thing. Lives would be saved and prolonged, people could exercise and eat and live life without a bottle of test strips and an insulin bottle as life support. As long as that cure doesn’t exist though, I think it’s fair to say we’d all like to have a generous portion of quality of life, and we’d all like to minimize the risks inherent to living with T1. In the diaTribe interview, Mr. Brewer talked about the need to look at more than just curing diabetes. He wants JDRF to be more invested in things like preventing T1 (which of course, does me no good, but it’s an example of this broadened vision), preventing and treating complications, and offering support so that as long as there is no cure, people can do more than live with diabetes – they can LIVE with diabetes. As someone who gave up on being cured years ago, mostly for the sake of my mental health and learning to contently dwell on my side of the fence since I can’t get to the other side, this was also a grand revelation to me. JDRF will continue to work on a cure, but for those of us whose chances of being cured dwindle as we grow older, JDRF is also going to work on improving our lives.

I sat back and reflected on the article, and I felt absolutely validated, after years of feeling like my existence mattered naught to JDRF. It really felt like a win-win, and I hope, a reflection of what we can expect in the future. Then, I recalled the reason I went to read the interview in the first place, a reportedly unfriendly forum discussion on CWD. I made my way over to see what was causing the hubbub. I read the first few pages, and felt like I had the gist of the discussion. I chose not to read the entire thing because I didn’t want to read a lot of mean-spirited comments. In retrospect, I probably should have read all of it because I’d like to think that would have deterred my participation. Unfortunately, that isn’t what I did, so I presumptuously thought I could participate, offering my perspective as an adult who’s lived with T1 for 32 years, and have it all be polite respectful. It seems I was mistaken.

The motivation behind my initial post was that perhaps if I could share what was good about the changes at JDRF, from my perspective as a T1 adult, that some parents might find some encouragement, or at least feel less disappointed in the changes at JDRF, namely diversifying their mission beyond just curing T1. Obviously, parents think that their children’s lives will be better without T1, which is why they’re so focused on a cure rather than channeling resources towards other issues of concern to diabetics. If I were a parent of a T1 kid, I’d probably see more value in putting money toward curing diabetes versus putting money toward better treatments for retinopathy, as Mr. Brewer described. That being said, even though I was told I’d be cured within 5 years back in 1978, I’m damn glad someone somewhere was researching retinopathy treatments, because if they hadn’t, the vision loss I experienced 13 years ago would have been permanent, and I’d be blind today. Hindsight is 20/20, and thankfully, my vision is 20/25.

I tried to convey how not being cured doesn’t mean that life can’t be great, not just in spite of diabetes, but it might even be great because of it. That’s how I’ve come to see my life, and I’m pretty sure I’m not the only T1 adult who can say aspects of my life are great because of diabetes. I’m a huge believer in uncovering the purpose of the tragedies in life, and I’m so grateful that the universe eventually allowed me to see how diabetes has enhanced my life. The reality of my circumstances is that growing up with diabetes did affect my personality, did affect the way I relate to others, did affect the choices I made along the way, did affect my career choice. If I didn’t have diabetes, I wouldn’t have chosen the many paths I’ve taken that led me to my husband and my friends and all the things that I cherish in my life. I’d probably still have a great life if I hadn’t had it, but I love what I have, and diabetes had a lot to do with that. What I tried to do was provide a positive glimpse into how life can be pretty spectacular even if one lives with diabetes for decades. For a group of people who appeared to me to be upset that JDRF had identified priorities in addition to a cure, it seemed like a potentially valuable contribution to the dialogue.

I was floored by the responses to my initial post and almost every contribution after that. There was the snarky suggestion from a parent that I sue them because they want they’re child to be cured. As it turns out, I never said that anyone should give up on the cure, although I’m not shy about sharing that I have. I didn’t express it at that time, but I’m happy that there are so many people who are invested in advocating for a cure. Personally, I prefer doing diabetes mental health advocacy, so between my advocacy work and the advocacy work of others, many of our needs will hopefully be better met. My point was that even if there isn’t a cure in any one person’s lifetime, life can still be good, even enriched because of diabetes.

There was also the suggestion that I think parents are dumb because I don’t think they know their children will become adults. Certainly, I had no such delusion. Sometimes I need encouraging reminders about things that are obvious, like that I should be grateful I have health insurance even though it’s crappy insurance and the insurance company is going to be the death of me. Or that an exercise regimen is completely frustrating when you get started because you have to figure out how to keep your BG’s from bottoming out or skyrocketing, but if you persist, you can overcome that rather onerous hurdle. These are things I know, but when I get upset, it’s good for someone objective to say, “Hey, Lee Ann, remember this!” So when I mentioned that these kids with T1 would become adults with T1, and JDRF would be there to support them unlike the way JDRF was not there for me and many others years ago, that’s all it was – a gentle, encouraging reminder.

I also encountered the assertion that I was committing “assholery”, which I will assume means that person thought I was being an asshole. This same individual proceeded to suggest I was being a “sanctimonious asshat”. Not long after that, there was the lady who said, “The very LAST thing I want for my child is for her to be defined by her diabetes as you clearly feel you are. Yuck. She’s so many things before she’s a person living with diabetes,” and the other lady was asked, “Damn right! My kids life today and yesterday and tomorrow is, would have been and could be, BETTER without D. Geez, are you so invested in being a professional diabetic that you can’t see that?”

I responded respectfully to all, and tried to show that there is some middle ground since we all have T1 in common. Maybe the parents are holding the oars on one side of the boat, and the T1 adults are holding the oars on the other, but cripes, aren’t we all on the same boat? It didn’t seem to matter though. Several people offered snarky responses with eye-rolling emoticons. Because I wrote about finding existential peace with diabetes, there were some sarcastic comments about being “zen” with diabetes. I can see how that could potentially seem ridiculous at first glance to a parent of a kid who has had T1 for a lot less time than I’ve had it, but if I can imagine how gut-wrenching it is to stick needles in a kid who’s begging you not to (having been that kid, let me add), is it a lot to ask that same parent to consider that I’m almost 40-years old, and this has been my life for almost as long as I can remember? The mere suggestion that I not embrace who I am and find every ounce of good in diabetes seems very nihilistic to me.

As I’ve expressed to a few people, I know it’s the interwebz, so I shouldn’t take their hurtful comments personally. People hide behind their computers, and think that’s free license to be nasty, but I naively thought the DOC was above that, thankfully because my experience with it has been ripe with friendship and love. It doesn’t matter if I’ve read your blog or participated in your community for years or one day or not at all. If you’re out there in the DOC, I assume you’re my friend because we live with diabetes. It doesn’t matter to me if you’re the patient or the spouse or the parent. We’re all in the trenches, and our relationship to diabetes and the time we’ve lived with it are the variables that affect our respective perspectives, each of which is just as valid and deserving of respect as another.

That brings me to a silly, but fond diabetes memory from my youth. When I was 13-years old, at diabetes camp (“This one time, at diabetes camp…”), my girlfriends Amy, Erica and I sat under a blanket on my top bunk and stuck our fingers with lancets to become blood sisters. It was one of those things kids did, but I remember it fairly clearly considering it was 25 years ago, and as rituals do, it bound us as friends. These days, rubbing bloody fingers with people isn’t recommended, especially strange people who reside in the computer, but all of us sticking our fingers, day in and day out, binds us. It’s a relationship I honor, respect, and value, and I hope that you, my blood brothers and sisters (and parents and spouses and children!), will be kind to each other, taking the opportunity to learn and grow from sharing our experiences, all of which are valid and add something valuable to the dialogue. Let’s never forget that these finger sticks bind us, and we get enough blood on our hands from that, so there’s no need to fight.