What the Eff are you doing here?

Today I had the privilege of attending an ADA workshop teaching potential advocates about diabetes and how to share this information with their communities. When I saw the email about this, honestly I was excited. I was like, YES, that is what I want to do. I want to teach people all about diabetes, I mean, diabetes is a huge part of my life and it’s something I like to consider myself a bit of an expert on.

I’ve always been pretty clear during my interactions with the DOC about who I am. I’m 22, I have Type 2 diabetes, I was diagnosed at 18 years old, I have a very low c-peptide that so that means I’m also insulin dependent. I’ve struggled with weight and body image issues my entire life. I want to be a doctor one day, and have done the pre-medical coursework while trying to balance life as a newly diagnosed diabetic. I’ve BEEN there. I know what it’s like to feel like a failure on so many different levels, to be overwhelmed, and to triumph in the face of it all. Sometimes I have bad days, sometimes I have good, but I’ve been there. Who better to talk about diabetes to my community? I figured I was a perfect fit.

When I say my community I mean people my age, people who might not ever think about their health because they’re young and invincible. As a speaker I pictured myself at the community college or my university sharing information and experiences.

So I RSVP’d.

Now, I’m sure I’m not alone in feeling self conscious about my weight. I’ve been honest, I lost a tremendous amount of weight before and after my diagnosis, only to gain quite a bit back after starting insulin therapy on top of a long bout of burnout where I getting out of bed in the morning was enough of a struggle, let alone counting carbs.

The first thought I had about this was “I am overweight. What the hell do I think I’m doing, going to be trained to speak to people about being healthy and with diabetes.” I didn’t feel worthy to be an advocate, because I felt less like the example of a successful PWD, and more like the stereotype someone thinks of when they think diabetic.

I almost didn’t go.

Standing in front of the mirror, wishing my shirt covered more of my upper arms, wishing I were about 10 lbs thinner, I almost didn’t go.

But I did.

I got lost, as I usually do. For an hour. In 90 degree heat and humidity. But I made it, sweaty, disgruntled, and still self-conscious, I made it.

Now, onto the actual workshop. Overall I did really enjoy the speaker and thought she was great! But I still had some little brain-twitchy, nagging thoughts and feelings going through the PowerPoints.

Nagging thought 1: This information seems a bit dated or sometimes not entirely right. For example choosing skim milk instead of whole milk. I personally take soy, almond or 2%, but never skim or nonfat dairy products because my blood sugar just really doesn’t like that. But that’s anecdotal, and I totally get it, YDMV (your diabetes may vary). Also about cholesterol re dietary fat, saturated fat, etc. There was a slide saying that coconut oil is a bad fat, which I’m not sure is true. In case you didn’t know there is a bit of a controversy as to whether or not eating saturated fat actually messes with your cholesterol. It seems that past studies are inconclusive at best, but I’m not an expert on this issue, please refer to PubMed or your favorite scientific journal article database to learn more.

The thing is, I had to remind myself that the goal of a workshop is not to disseminate the newest research. Which as a science-nerdy type of person is hard for me to remember. The point is to give people information on some better (and realistic) choices they could be making regarding their health.

Nagging thought 2: These PowerPoints seem woefully incomplete. Okay, this one I asked about. Kind of dickishly I admit. Another girl there introduced herself as a pre-med college student, so I figured that gave me license to go “Oh hi, I’m pre-med like the other girl, but also I’m a grad student at *insert prestigious place* in biomedical sciences.” What? No one cares. God me, what’s wrong with you. But I felt like I had to JUSTIFY myself. Like, I have to tell you how educated I am because I’m fat and Type 2, and I NEED you to know that I know science, and I didn’t try to do this to myself. That in itself is kind of effed up.

The point of my question was how much “dumbing-down” do we need to do? Don’t get me wrong, I really don’t mean this in a rude way, but my background is in science, and I had to memorize stuff like insulin synthesis and gluconeogenesis for biochemistry, I wrote lit reviews on the effects of insulin resistance on brain function, I’ve researched the hell out of this condition. In general, I like to think I know what the hell I’m talking about. And of course the ego monster in me wants everyone to know it too (sorry…). The speaker had a great answer for me though, although the slides seem scant to¬†me, to someone who has no real background knowledge in general taking-care-of-themselves-ness this is huge! They just learned that you can’t just count sugar, but total carbs. They don’t need to know about gluconeogenesis. It’s hard for me to imagine not having this wealth of knowledge about diabetes and human biology, but I have to remind myself that not everyone is as fortunate to have the health education I have.

Also, I am NOT a HCP, and she said to me that it’s not my job to give medical advice. Point taken. But I still felt like there were things that should have been said. For example, there was nothing differentiating Type 1, Type 2, LADA, MODY, etc. I get that people don’t give a shit about other, rarer types of diabetes, but at the very least say you’re trying to prevent Type 2. The welfare of children with Type 1 diabetes is in the hands of others when they’re away from home, we need to educate people that these kids can’t prevent their diabetes, and it is different. And that brings me to the prevention aspect.

Nagging thought 3: You really shouldn’t have said you were young and Type 2, and what the EFF are you doing here? During intros we were asked why we wanted to be a presenter. Well, naturally, I said I’m a young T2 and I’m super passionate about it and want to share. But then came the slides. Oh the slides. Let me make this clear, the presenter was great, she herself was T2, the attendees I assume are nice people, they didn’t really talk to me much. So the weirdness I was feeling was probably all in my head.

Much of this discussion was about PREVENTING diabetes, as well as living with it, but MOSTLY preventing. Okay, why the hell am I here? I already have diabetes, no one is going to want to hear me talk about preventing diabetes. I even have Type 2, the kind you’re supposed to be able to prevent! Well, here’s the thing, I really thought there should have been something touching on the fact that many people might not be able to prevent diabetes if already diagnosed with pre-diabetes. There are a lot of pre-diabetics that have already lost beta cell function, so while it IS about living as well as possible, it’s still possible that they will be diagnosed with diabetes. Also, I’ve read newer papers detailing how pre-diabetes is probably just diabetes. Someone there said they were diagnosed pre-diabetic, but they’re getting rid of it. And I don’t know if I can fully commit to telling an audience that if you’re diagnosed pre-diabetic that you can “get rid of it”. Sometimes switching to brown rice and working out isn’t enough to keep your beta cells alive! But maybe I’m wrong, it’s very possible I’m veering too close to that “you’re not a health care professional, you don’t give medical advice” line.

But I still felt embarrassed. I did catch a couple glances in my direction as we went through the “why do kids have Type 2 now?” slides and the “lose weight to prevent diabetes!” slides.

Okay. I get it. I’m fat. I’ve got diabetes. Let’s just stick the kick-me sign to my back and get it over with.

I think that teaching people about the dangers of being obese, of not moving enough, of not paying attention to your diet is PARAMOUNT. Of course I want to teach people about that, it would be wrong not to! I wish my parents knew this information when I was a child! But I can’t put my finger on it, something seemed missing from the slides.

The woman giving the talk made it a point that the goal should be to let people with diabetes know they are not alone, and that they shouldn’t feel guilty. I love her for that! But then again she is a person with diabetes.

The information on the slides doesn’t convey that sort of message. As someone with diabetes and with family members and an SO with diabetes, I know to tell people that message if I were the presenter. To say, “Hey, listen, diabetes is not shameful. It is a condition. You live with it, you learn to THRIVE with it. You are not alone.” But most of the people who were there learning to be “wellness ambassadors” were non-diabetics. People who don’t know what we know, don’t understand the emotional baggage that comes with diabetes, and probably never will as long as they’re lucky enough not to join the PWD club. Join is the wrong word, bound, gagged and thrown into the PWD club. It isn’t a choice. Even for those of us with Type 2.

So let me wrap up my novel. In summary the speaker and ADA staff were excellent, warm and friendly, the material was good, and I was just kind of an awkward mess. But hey, that’s who I am. Sure, I have some mixed feelings about it, but overall I am happy that there is an organization trying to go out there and teach people how to make better choices with their lives. The goal is to have a healthier, happier population. And that’s what matters in the end.