Keeping the Patient Dignity

I've had type 2 diabetes for nearly 4 ½ 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. 

The Privilege of Living with Diabetes

Dear Beautiful Person (who happens to have diabetes),

Today, you are here. Is there a purpose to your being here? A universal, master purpose? Many claim to have the answer to this, but the honest response is that no one knows. The question is, in fact, irrelevant. You are here. That is a fact. Everything else is just speculation.

It matters not if it's an illusion, a grand plan, a godly design, or a happenchance. You are here.

And while you are here, think upon the magnitude of your existence: The last science knew, the universe was 13.8 billion years old. During much of that time, Earth was a big, hot mess. Life only began to evolve 3.5 billion years ago. Modern man, alone, has only existed for about 200,000 years...  and only in the last 30 years or so, have we seen vast improvements in industry, technology, education, science... and medicine.

Medicine.

If you would have been diagnosed with diabetes (of almost any type) back in the 1800s, it was most certainly a death sentence -- if not, a very challenging life.

Insulin wasn't discovered as a treatment for diabetes until the 1920s, thanks to Banting and Best, when many children were literally dying of malnutrition and emaciation. Banting had the heart to insist on not patenting their new-found medicine, so that it could reach as many as needed it.

Metformin was invented in the 1920s as well, and has been used in other countries since the 40s, and 50s. It was not, however, approved in the United States for use with type 2 diabetes until 1994! Yes, that is not a typo. 1994.

Back in the pre-insulin days, starvation was all people knew to do to control diabetes. To eat basically no carbohydrates, or really anything much -- as proteins and fats can also raise glucose (though, admittedly, to a lesser degree). Many simply died because it was so stressful -- or they just couldn't resist pinching food, while no one was watching.

It wasn't until the 1980s when a person with diabetes was able to monitor their levels, independently, and the first glucose monitors appeared. If they had insulin -- that was a good tool -- but if they didn't, all they knew to do was avoid eating sweets. Diabetes has always been with us, at least in the archaeological records, since Egyptian times, and we've known it's a disease about high glucose, but aside from that, there wasn't much monitoring of glucose levels until well into the 80s. Ask anyone who was diagnosed many years ago, and they will tell you stories of urine testing (sometimes, once a month, at a doctor's office), and sharpening and boiling their own needles, for sterility.

In fact... we really didn't know that diabetes was not a disease caused by eating excess sugar and sweets, until at least the early 90s. The other day, I saw a very old VHS tape for an old Vitamix blender I have acquired, and in it, they recommended diabetics substituting honey, in place of sugar. I guess in their minds, anything that was natural sugar, was not really sugar.

And here we are now... 2013. With a variety of different types of insulin, mimicking both basal and bolus outputs from our pancreas, insulin pumps and CGMs to allow us to eat with more freedom and catch hypoglycemic events, the knowledge of counting carbohydrates and the freedom to eat cake, diabetes alert dogs, and glucose meters small, sleek, or indistinguishable from an iPod, small, and painless needles... and on the thresholds of smart insulin, biohub and artificial pancreas options, and noninvasive glucose testing.

. . .

Yes. Diabetes is still hard. But we are blessed to live in 2013, and not 1913. We can see ourselves as the victims of fate, or as the blessed recipients of a grand universal lottery. Think about the kind of life you have the chance to pursue, right now... that you would have never had a chance to pursue back then. Let it sink in -- let it's blessings humble you. 

Yes... diabetes can be embarrassing. But all disease is humbling. 

Even if you never had diabetes, life is much of an embarrassing process, as well... At birth, and near death... someone has to wipe our behinds. We get old, and lose our good looks... we may get cancer, and lose our breasts, we may get alopecia, and lose our hair... We may be like Farrah Fawcett, and get colon cancer -- colon cancer. 

Illness is humbling -- for we have to accept that we are frail, that we get sick, that we get old, and yes, sometimes... that we haven't always done the best to take care of ourselves. But, can you think of anyone who has been perfect -- all of their lives? Always perfect? I know one or two who claim they were -- and you know what -- I honestly don't like them very much. For one, they are liars. They may have read the manual on living, but they haven't actually lived very much. No one learns to ride a bike from reading a book -- and thus it is with living. Some of us just have to fall a few more times, than others... and it is our beautiful, gnarly scars, which make us who we are.

I never thought of Farrah Fawcett as much of a hero -- until her war with colon cancer. And I never thought much at all, about Ryan O'Neal, until his passionate devotion to the woman he sought to wed on her deathbed. 

Don't be angry at your loved ones, beautiful person (who happens to have diabetes). It is not a matter of blame. It is not a matter of fault. Don't leave this world, and lose hope... for these massive amount of events I have listed had to have gone through... and for you to be here, in this point in time. Your loved one, well... your loved one simply LOVES you. They are in deep fear because they do not want to be without you -- at least -- not sooner than life will will. Can we blame them? 

I was angry once... at my father for (in my own warped perception) not trying harder, at life and circumstance, and God, and you name it. I was once that angry loved one... living in FEAR. Sheer fear. But, you see... for whatever reason, you are here -- in this very moment in time, and a time when you happened to meet your loved one. This is a very precious moment in time... In fact, to quote Lawrence Krauss -- a renowned Theoretical Physicist: 

“Every atom in your body came from a star that exploded. And, the atoms in your left hand probably came from a different star than your right hand. It really is the most poetic thing I know about physics: You are all stardust. You couldn’t be here if stars hadn’t exploded, because the elements - the carbon, nitrogen, oxygen, iron, all the things that matter for evolution and for life - weren’t created at the beginning of time. They were created in the nuclear furnaces of stars, and the only way for them to get into your body is if those stars were kind enough to explode . . . The stars died so that you could be here today.”

Is diabetes embarrassing? Well, sometimes... But I am in fact honored to be so privileged to be alive, today... right now... Experiencing this universe, the love of friends, and family... The patter of rain on my window pains, the loving purr of my cat, and the imperfect love and friendship of that idiot that still lives here which I call my husband.

Yes, I am honored... to be living here, and living with diabetes.