Tuesday, January 10, 2012

The Messy Language of Type 2 Diabetes

"Well, my husband is a board certified endocrinologist, and he told me that whenever a Type 2 patient is 'good,' and gets their numbers 'normalized,' that he removes the Type 2 Diabetes diagnosis, and changes it to a 'Metabolic Syndrome' diagnosis, instead, to help them out." -- Misinformed Mrs. Know-It-All.
The woman was very angry at me. How dare I suggest Type 2 Diabetes has no cure. And furthermore, I could go get a gastric bypass surgery, if I wanted. That, for certain, was also a cure. This, of course, was followed by a few "You people will never be like us; you need to stop comparing yourselves to us... You keep trying to act like we are the same, or have it worse than us, or that your disease is just as bad as ours" type of comments. I can't say that I blame her entirely for her misinformed, self righteous attitude. (Okay, I know she was being kind of a bitch. I'm just trying to be nice, here.)

This is the every day bread of Type 2 Diabetes awareness. Raising Type 2 Diabetes awareness is not easy. In fact, it's one of the most painful things I've ever had to do in my life. My husband certainly doesn't understand it, sees a redundant theme in it, and wonders why I don't just get out of it... since it's obvious I can't change the world. I've gone to bed crying, on more than a few nights.

The comment above, is of course, ridiculous. If there is a board certified endocrinologist out there, doing this, he needs to have his license revoked. Simple as that. He is doing NO ONE any favors. He is hurting his patients a lot more than he knows. I understand that insurance companies love judging us -- hey why not, the media has done a great job of misinforming the world, and insurance companies get their news just like the rest of us, and want to use that to safeguard their old, mighty dollar -- but the value of a 'small defense' against an insurance company does NOT outweigh the psychological harm and denial you feed into a person by acting like their diagnosis doesn't exist. Would these people dream of telling someone who had AIDS "If you're good, and your labs come back good, I'll change your diagnosis to HIV positive, instead?" Yeah, I don't think so! (It's not entirely a perfect analogy, but you get the idea...)

But people don't GET the permanence of Type 2 Diabetes. What's worse is that, while we preach day and night that this is an epidemic of epic proportions, our medical establishment does not act like it! (Oh, lots of people are acting like it, don't get me wrong... but it's, mostly, the people who want to scam us, and take advantage of us...) If this is such a serious threat, why isn't the American Medical Association, and the American Association of Clinical Endocrinologists, making it a priority to get doctors educated, and prepared, for diagnosing, and empowering patients? Why are they not working hard to give patients the weapons to fight back, and effectively not feel themselves the hopeless victims of this disease? (I know someone out there will claim that they are... but the proof, or lack of proof, is in the pudding, folks.)

  • Patients are out there, going undiagnosed, not because they don't regularly see a doctor (though some, undeniably don't...), but because doctors don't know how to recognize the signs of diabetes, or are UNWILLING to mark down a "diabetes diagnosis" in a patient record, thanks to insurance company scheming. More and more Type 2 Diabetes patients are being diagnosed by other medical professionals, such as gynecologists, urologists, dentists, and eye doctors. Often, a patient even gets misdiagnosed based on ridiculously old knowledge, like assuming that an adult could not be a Type 1 Diabetic, instead, leaving the patient vulnerable to Diabetic Ketoacidosis, and Diabetic Coma.  
  • Most doctors, especially Primary Care Physicians (or Family Doctors), get a MINIMAL amount of diabetes education in medical school, and NO extended diabetes education throughout their careers. Diabetes information, care, and knowledge is growing about as fast as technological advances are... why should doctors remain in the dark, if we, as patients, can't afford to do so? Some doctors are going by on 20, and 30 years of OLD diabetes education! As a consequence, when a diabetic patient gets diagnosed, thanks to this lack of knowledge and insurance company scheming, patients get denied access to specialists, denied access to certified diabetes educators, denied access to dietitians, denied access to insulin, etc. Doctors, ROUTINELY, give NO information or direction to a newly diagnosed Type 2 Diabetes patient, leaving them vulnerable to whatever might be out there, on the internet. There is something vastly wrong with an insurance company that denies access to a dietitian, or certified diabetes educator, but is happy to approve gastric bypass surgery. In other scenarios, doctors give patients extreme misinformation, such as "STOP eating ALL fruit because they are high in carbs." Ummm, hello, not all fruit is made the same... We need to learn to MANAGE food, not put the fear of God in people.   
  • The medical establishment is allowing itself to be ruled by the treatment guidelines of the American Diabetes Association -- an Association with clear conflicts of interest, per a recent study done by the Mount Sinai School of Medicine, and which has been SLOW AS MOLASSES in embracing the future of diabetes tight control, and management. What's worse, they have GREATLY contributed to diagnoses getting delayed and delayed. This is WRONG and unacceptable. Doctors and Endocrinologists need to be educating the ADA, and not the other way around! 
  • Instead, more and more "doctors" and "medical professionals" are taking advantage of the serious need for diabetes patient education, as a door to write books, push supplements, spread their own pseudoscience, and MAKE MONEY. 
Don't get me wrong, here. I am not anti-doctor... and I understand that doctors are humans, too, who can make character and judgement mistakes. There are some AMAZING, well educated, empowered doctors out there, working hard to help empower diabetic patients, and help out in the online diabetic communities... But the overall lack of education, and standards, in general, for our medical professionals is wrecking havoc in our lives, as patients, and it's wrecking havoc in our ability to garner empathy, build awareness, and motivate outsiders to help donate their time and money in the hopes of finding a cure. Who donates to something they think already has a cure? 

Dear doctors, you have MUDDLED the language of Diabetes, and made it a messy affair. Every time you get on TV, write a self serving book, misinform a patient in your office, you MAKE IT HARD for us to live, control, master, and grow, with this disease. How can we, as patients and advocates, have power behind our voices, if you tell lies to people with an M.D. next to your name? Who is going to believe US over you? 
  • STOP making up statistics to sell books! No, 50% of Americans don't have diabetes... 33.8% of Americans are obese, but only 8.3% of Americans have diabetes, and that number INCLUDES all types of diabetics, including the undiagnosed. Anyone who claims these things NEVER quotes any real studies, double blinded studies, studies published in any legitimate journal of medicine, of any kind. They make up catchy terms to feed on people's biases, and fears for self serving purposes. Stop getting on Dr. Oz to sell LIES. Broccoli is NOT going to cure anyone's Diabetes. (I'm looking at you, Dr. Hyman.)  
  •  STOP telling people gastric bypass will cure their Diabetes. It will most certainly NOT. And what pisses me off the most, is many of you have gotten on TV, and the news, and told everyone that it is, and that it's 100%. Now I can't frigging walk anywhere without some moron asking me why don't I just get bypass, or some other form of that. Well... don't mind if after being called misinformed, and uneducated, by people the likes of Misinformed Mrs. Know-It-All, above... that I get angry when articles like this hit the news, FINALLY admitting the truth... No I am not in crazy denial! It is NOT a frigging cure, or a guarantee of anything! Remission is NOT a cure, it is tight control. And this surgery is a Russian roulette! And, hello, I can improve my OWN care without a surgery, and *I have*, thank you very much. Someone should staple your mouth, instead. :S 
  • STOP throwing terms like "reverse", "remission," and "cure" around, in exchange for tight control. Even a Type 1 Diabetic can achieve tight control, and reverse complications, and that does not mean they are cured. Type 2 Diabetes is a progressive illness that requires vigilance, and ongoing monitoring, and with time, those medication free moments will be just a thing of the past, and we will need oral medications, and insulin, to keep healthy, and in tight control... Most full blown Type 2 Diabetics will eventually need insulin, in their lifetime. We may be able to prevent complications, or even slow or 'reverse' the progress of some of them, but there is NO reversing or curing Type 2 Diabetes. Stop bullshitting people. We are big boys, and girls. We can deal with the truth.
  • STOP telling people that losing weight will make their diabetes go away! Stop telling patients that they are cured, while they are in your office! These are harmful lies, for all the reasons I mentioned above. Weight loss does NOT remove Type 2 Diabetes. It only helps MANAGE it. Type 2 Diabetes has NO CURE. 
  • STOP telling people they can prevent Type 2 Diabetes. NO ONE can prevent anything. This creates feelings of insecurity, self blame, and inadequacy when a person gets diagnosed with diabetes despite having done everything in their power to change their odds. Why not simply talk to people about REDUCING THE RISK of getting Type 2 Diabetes? Isn't that, instead, a little more realistic? Diabetes is NOT a zero-sum game. Everything has risks. Nothing is black and white. 
  • STOP equating diabetes with obesity. I GET IT. I am not a moron. I know that there is a very STRONG link with diabetes and obesity. It is a risk factor. Obesity, however, does not mean diabetes.  There is NO SUCH disease as "Diabesity." Obesity is it's own disease with its own complications, and Type 2 Diabetes is an autoimmune and metabolic disease. There is no known cause for Type 2 Diabetes. Why not all obese people develop an autoimmune response that leads them to Type 2 Diabetes? No one knows. And why are not all Type 2 Diabetics overweight? (Sure, some are misdiagnosed, but many are not...) The fact is, no one knows. There is also a very strong link between diabetes and pollution and pesticides, BPAs, drugs (such as statins, beta blockers, antidepressants, antipsychotics, steroids, etc.), other illnesses (like Polycystic Ovarian Syndrome), surgeries, drinking, smoking, etc. Why can't we discuss ALL of those risks? Why can't we be realistic about Type 2 Diabetes? Why can't we speak to people with the entire truth? There has been a 400% increase in antidepressant use by Americans.  Don't you think THAT has had more than a little hand in raising the Type 2 Diabetes incidence? 
And another thing... if it's so easy for you to tell a patient with Polycystic Ovarian Syndrome that it would be helpful in controlling their disease to "eat a balanced diet low in carbohydrates," WHY IS THIS SO FRIGGING HARD TO TELL TO A DIABETIC PATIENT, AS WELL????? (Oh, that's right... it's because pills to treat PCOS don't cost an ARM AND A LEG, and don't make you any kickbacks.) It's not that that is all that is required for better health, but come on, throws us a bone! People are out there avoiding sugar, and all fat, thinking this is what made them diabetic, and thinking what we eat in itself gives us diabetes! It is NOT. 

Doctors, this may not be entirely your mess... But you sure have lathered yourselves with GUSTO with the manure of laziness, and greed. I hold you PERSONALLY accountable for the state of our nation's health when 2050 rolls around. Get some guts, and fight on our behalf.  





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