I've had type 2 diabetes for nearly 4 � years. Though not a very long period of time, it's still been very challenging...

I've lost weight, gained weight, lost weight; I've low carbed, extremely low carbed, and eaten intuitively; I've exercised myself to death, been a couch potato, and a simple walk around the block lover; I've quit soda, drank only water, and then gotten on diet soda, again... I've had highs and lows, and lows, and highs. I've been proud of myself, and disappointed in myself -- and I've learned just how HARD it is to change myself -- all willpower aside. I've even dealt with some very angry type 1 diabetics and some very unhealthy diabetes forums and communities.

All of these challenges aside, none of these compare to the one big challenge I've had to face while living with type 2 diabetes... keeping my dignity as a patient.

I'm no stranger to the discussion of keeping the patient dignity. I've challenged various prominent diabetes writers on their own biases and deliberate fact twisting, I've written various letters to television programs, to diabetes programs like Take Care of Your Diabetes, to celebrities like Conan O'Brien, and have even hosted an online Diabetes Ice Cream Social event to get people thinking differently (and been skewered for it). My most famous of these discussions on patient dignity, however, happened as an ePatient Scholarship recipient, when I attended Stanford University's Medical School, for their 2012 Medicine X conference. (For that little escapade, I got editorialized by Esther Dyson as someone who was wanting to pass the buck for being fat.) 

And therein lies the rub. We want to find people to punish and blame. We want to skewer people for "giving themselves" type 2 diabetes. 

This is not an abnormal thing. It's actually a part of human nature to want to find vindication for issues -- it's a form of 'negative altruism.' The problem is that the social dialogue that has been crafted in the media, and in part thanks to illness advocacy organizations like the ADA, various medical groups, and those who want to exploit the obesity and diabetes medical communities -- has been centered on discussing obesity and diabetes as though they were a crime against society (i.e., obesity and diabetes are going to bankrupt the economy, destroy the healthcare system, our children, bring governments to their knees, destroy third world countries, bring a second coming of Christ, etc.) So, people with either obesity or type 2 diabetes, are not seen as persons struggling to take ownership of their health issues -- but as people failing to take accountability for a crime against society. "Be accountable for your health," they say. Obesity and diabetes are not seen as personal struggles for personal health ownership -- but as a moral failing of the individual, a crime against society, and as a justification for social outcasting.

This is a HUGE undercurrent in the diabetes dialogue at large! 

It colors the mindsets of many an educator, clinician, registered dietitian, media or TV personality, people trying to sell us goods and services, and of course... persons presenting new technology at a conference like Medicine X. It's a problem. It's a HUGE problem. And when one addresses such a problem, one is portrayed as though one were trying to pass the buck for being obese, or having diabetes. There's a certain self important arrogance about it all... If I point out your moral failing for having 'given yourself diabetes,' then I must be a more moral, and worthier, contributing citizen to the society at large. 

Now, this blog post is not about whether or not one can 'give oneself' diabetes. That would be an entirely new blog post -- and I think I've spoken on that before... My overall view on whether one 'gave oneself' diabetes, however, is that it's IRRELEVANT. Yes, it's irrelevant. Once a person has diabetes, whether or not they 'gave' themselves diabetes is, quite frankly, irrelevant. One can analyze a person's decisions and life style choices till the cows come home... but once that person has AIDS, cancer, diabetes, heart disease, etc... is it now time to start treating them without respect, or dignity? Should we spit on their faces, and socially mock them while at the same time claiming to try to help them? "I'm going to help you, fatty, because you can't help yourself! You have no self control, and you can't stop eating!" 

I think many misunderstand my words here, when I speak of patient dignity. Patient dignity is NOT a patient passing the buck; it is not a patient not taking ownership of their health... Dignity simply means treating someone with a certain basic level of respect for being a human being in the midst of a trying, and challenging situation -- whether of their own doing, or not. We are all human; none of us is above the struggle to make the best choices. Though this is another topic worthy of further exploration in a different blog post, the food choices many of us make day in, and day out, cannot be completely and genuinely labeled as 'mistakes,' for they are the product of our programming as children, as members of some particular society, and as mammals evolved (thanks to natural selection) to prefer more nutritionally dense foods, especially in order to better face periods of famine. While many have had the blessings of genetics, and a healthier food environment overall (familially and culturally), it takes enormous effort to change oneself as an individual, because it is not simply a product of will -- it is a product of reprograming, and reprogramming is HARD. You aren't just fighting your family's bad eating choices, you are also fighting millions of years of evolution! So it is thus, unfair to treat these issues as though they were black and white, and as a people's moral failings, or as a crime against society. Also -- the person with type 2 diabetes is NOT accountable for their health to you -- so get over yourself. Type 2 diabetes has many different triggers (not causes), of which obesity is just one of them, and the others are not quite as uncommon as people want to think. The scientific and peer reviewed studies showing this are there -- but they seldom get public light, because they are NOT media-attention worthy. Sensationalism is simply what sells. 

All of these things aside -- the overall goal of ANY health initiative by any group is to make positive change. But if we want to help a patient community to make positive changes toward a general health improvement, what we want to do is focus on that 'positive' word. Putting the word "skinny" in front of your company's marketing, cracking jokes about a community's obesity or bad eating habits, how they gave themselves diabetes, stereotyping, claiming diabetes can be cured (or blaming people for not curing themselves), turning them into a 'meme' or down talking to them is NOT going to make positive change. Instead, all it will create is an underculture of social pariahs who are not just denied services and tools, but who do not seek the necessary medical attention they need, the tools and education they deserve, or the new lease on life that they could have. In other words, the culture we have NOW.  

If you make it too embarrassing and shameful to have diabetes -- people aren't going to work toward not getting diabetes... People are still going to get diabetes, and they are going to die in silence, from diabetes. 

In the end, the person who'll end up costing more to a society is not the person with diabetes: it is the diabetes bully. 

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This is the second of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-) 

Much of my first day at Stanford MedicineX left me feeling like I didn't belong there. I wasn't an innovator, or a CEO of anything (except, perhaps, CEO of my type 2 diabetes), and I wasn't quite sure what my voice was going to be at this conference. I wasn't even close friends with any of the other diabetes advocates who were attending. I felt, well, maybe I was a bit bold in having applied for this conference. But by the time our orientation dinner came around, I became a bit more confident in myself.

Carb centered food everywhere.
How apropos. 

Dinner was had at the quirky, randomly decorated Buca di Bepo restaurant (where you have to cut through the kitchen to get to the dining room), and there I found some comfort. Many health advocates of all walks of life, with all sorts of conditions, all in my same spot. Some with a few more dollars than I, some with fancy positions; some with just their blog. All just like me. People, passionately believing in raising patient awareness, having a friendly dinner and conversations of where they'd been on their various health journeys.

Things were going to be alright. I could do this, I thought. The twitter voices of the many I had met, now echoed into my reality. The voices of those surviving and thriving with breast cancer, rare diseases, heart conditions, liver transplants, rheumatoid arthritis, asthma, Crohn's disease, and of course... diabetes, among many others. Stanford's Med X was going to be patient centered, and we were going to take front row seats into a whirlwind of personal stories, and imaginative ways in which silicon valley wants to make an impact.

Day 1: The Self Tracking Symposium

"The best way to anticipate the future is to fully understand the present ...  the best way to design useful tools is to notice and respect what people are already juggling in their lives." -- Susannah Fox, Pew Internet & American Life Project, on the future of self tracking.

Pretty sure this app's not
going to help anyone, though.

I'm no stranger to self tracking. There's self tracking everywhere. Track your weight, track your heart rate during exercise, track your laps, track your steps, track your BMI, track your waist circumference, track your period, track your basal temp, track your anything, and everything. There are even many apps and things out there to help patients track these things, as well as their glucose levels, or their insulin and medication usage. MedX discussed several of those apps during various startup and innovation segments. Those can be useful, in their own level... and some will be so revolutionary, that they will no doubt, forever change the ease of use of many of our medical services, and ideally, save us a lot of money as a whole (patient, industry, nation, etc.)

But what I wasn't aware of... was that the science community was on to us. On to us patients who actually self track for something more meaningful than this. Some of us patients self track because we are our OWN science experiments... because clinicians have stopped paying attention to us, or acknowledging our conditions. Because we need meaningful ways to learn, and track patterns, and self adjust for the daily grind of managing cumbersome chronic health conditions. Because those things are never found in textbooks, and are seldom ever discussed by medical professionals. Yes, some of us self track because we want to live another day, month, year, or decade... and because we want to be heard by our medical team -- and we need a voice, and we need ammunition. We need co-operation. We need acknowledgement. Sometimes, we may even need a diagnosis.


So, meet Allan Bailey. Allan Bailey is one of the self trackers. One of us. There were other self trackers, with very impressive stories to be told... but Allan Bailey has been living with type 2 diabetes for the last 27 years (onset at age 18), so I find myself a bit biased to bring him up. Allan is one who seriously took matters into his own hands... and paid for it big time. Yes, and he paid for it to the tune of around $2K. You see, Allan got pretty tired of being given the runaround as to why his blood sugars were always so all over the place... he was told his control was 'okay' and kept being treated by conventional medical standards, but Allan was not satisfied. Allan was already living with heart complications, and four stents in one vein. So... Allan bought himself a CGMs (a continuous glucose monitoring system), to really help him learn why his blood sugars were all over the place. I'm really not sure how he managed to arm wrestle his clinician into prescribing him this device, but Allan had to pay for it out of pocket, in full. Of course, it didn't take long for him to see who the real culprits in raising his blood glucose were: breads, grains, etc. Carbs. Allan never imagined that his CGM would turn into this instantaneous feedback loop for what he ate, nor that it would turn into a behavior modification device that would lead him to euglycemia, and weight loss. Doctors never care for prescribing CGMs to persons with type 2 diabetes -- usually only to those living with type 1 diabetes, particularly because it has alarm systems to help deal with potentially dangerous low blood sugar levels, and because of how costly it is. (Nevermind that the cost of complications from uncontrolled diabetes far outweighs a $2K device, and it's supplies.) Allan now has an A1c of 5.1%, has greatly improved his health, and reduced his medications.

Now, as wonderful, encouraging, and brave as Allan's story is... it makes me angry. Very angry. Can you imagine why? Wait for it...

WHY THE HELL WOULD A MEDICAL TEAM NOT EXPLAIN TO THEIR PATIENT THAT THE BIGGEST REASON OUR GLUCOSE LEVELS RISE IS BECAUSE OF OUR CARBOHYDRATE CONSUMPTION??????????? WHY DOES SOMEONE NEED TO SPEND THOUSANDS OF DOLLARS OF THEIR OWN HARD EARNED MONEY TO FIGURE OUT THAT BREAD AND GRAINS, AND PASTA ARE LIKE POTENTIAL KRYPTONITE TO A DIABETIC? WHYYYYYYYYYYYY????????? HADN'T ANYONE EVER HEARD OF COUNTING CARBOHYDRATES, AND MEASURING PRE AND POST PRANDIAL RESPONSE? YOU CAN DO THAT, AND PLOT YOUR OWN BELL CURVE WITHOUT THE NEED OF A FANCY $2K DEVICE!

This, of course... is not Allan's fault in any way. Allan was a creative person, and did what he HAD to do... and is now very healthy for it. All the power to him.

My story could have well been Allan's. Except that I ate food, noted what I ate, tested every 30 minutes, spent a heck of a lot of money on test strips (even discounted ones) as well as relying on the kindness of strangers for them, and quantified this information on a spreadsheet. It didn't take long for me to bring a 10.5% A1c to 5.3%, and it has remained below 6% ever since my diagnosis. But, like Allan, I was given a big runaround for a while... When I was diagnosed, my clinician initially refused to accept I had diabetes of any kind, even though I had such a high A1c and had multiple fasting blood glucose tests well above 200 mg/dL. And when she did concede I had a problem, she merely said "I'll google the ADA website, and tell you what you need to do." HECK, I CAN DO THAT, MYSELF! Why was I wasting my precious time in her office, for that?!?

I'd love to have a CGMs, because who doesn't love to see instant graphs and things... and I am SURE that it helps a lot with compliance (and yes, it probably adds to guilt, too, when we fail.) But it's sad that persons with type 2 diabetes routinely get denied useful, powerful, quantitative technology... and this denial is not limited to the CGMs. Many patients are denied an adequate numbers of testing strips, or even a meter at all! But what good would these tools do a person with type 2 diabetes if what they are denied is the most important thing of all... KNOWLEDGE?

. . . 

At the previous dinner, when meeting several of the other "ePatients" attending Medicine X, I had a few, sort of incredulous questions as to the state of type 2 diabetes care... and the adequacy of that care, and education for the patient. What about the ADA, I was asked? Yes... what about it? In the words of Amy Tendrich, "Patient advocacy groups are not really patient advocacy groups."

I really hope that Allan's story was able to bring even a snippet of acknowledgement into our reality as persons with type 2 diabetes, the reality and importance of self tracking, and the need for patient inspired/centered care and technology. I know that I was FLOORED to see a different take on the usual 'just diet and exercise' testimony.

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