Wednesday, November 9, 2011

Diabetes Etiquette... For Diabetics

I love, love, love the benefits the online social community can bring. Finding, and meeting others who are just going through similar enough experiences, is probably one of the most healing things a diabetic person can experience. There's so much REDEMPTION in just being with other diabetics, in THEIR shadow of hope and light... Let's face it, outsiders don't usually understand us... and doctors often don't understand us, either. Heck, sometimes we're lucky to even get an educated enough doctor... much less an understanding doctor. It's not uncommon for persons without diabetes to say some really insensitive, uneducated things... So it's also no surprise that one of the guides developed to help diabetics traverse the waters of outsider social stupidity is Accu-Check's guide for Diabetes Etiquette for People Without Diabetes.

That being said... the topic of this blog post might, or might not surprise you.  I'm not here, this time, to talk about insensitive, non-diabetic folks... but about insensitivity within the DIABETIC community.  As much as I love our community, and we bring light and awareness to many, many things, we really need some major help in these areas... Yes, it's true. We need to work on our sensitivity, and love for one another... because when we're pricks, we...

  • Cause people a lot of personal feelings about their diagnosis
  • Confuse people about the direction of their diabetes management
  • Make people feel marooned, and misunderstood... maybe even threatened
  • Ruin discussions that could be productive, and help ALL diabetics learn and grow
  • Ruin forums, and isolate folks from joining and participating
  • Do unto other diabetics... what we don't want non-diabetics doing to us! 
Lately I've experienced firsthand, and witnessed a lot of this in our community... and quite frankly, it's time we started demanding of ourselves what we expect and demand of others without diabetes.  So... I've decided to make a list of etiquette points... (dun DUN dun...) 

for people WITH Diabetes.  

Having diabetes is challenging, and embarrassing enough, at times... especially with the world's misconceptions and misconstrued ideas about who we are. On top of that, many diabetics do NOT get any education on the part of their medical team, false reassurances that they do not need to worry 'it's nothing,' and even LESS help with the paralyzing psychological aspects of denial, and coping with sudden and drastic life changes.  Do NOT assume someone who is not making the right choices is just some slob. You are NOT in their shoes, and are only looking from the outside in. 

Moms did NOT overfeed sugar to their babies; Type 2 Diabetics are not whiny, out of control slobs. It is NOT okay to point your finger at the world for recriminating you, and then turn around and point it at your fellow diabetic! Just because your neighbor Jim Bob, is a bitter, mean Type 1, does not make everyone else with Type 1 this way... and just because your aunt Betsy with Type 2 seems to pay no mind at all to her Diabetes does NOT mean everyone else doesn't! I can guarantee you that as far as there are stars in the skies, there are people of ALL characters and walks of life affected by EVERY disease.  Not all Type 2s are heavy, or uncontrolled; not all Type 1s are thin, and controlled... Not all Type 2s are ignorant about their disease, and not all Type 1s are well versed on all their options. Just the other day I saw a Type 1 woman sharing with the world, on a forum, that Type 2s turn into Type 1s when they need to inject insulin... Ummm, yeah. I don't think so, lady. 

People, we must educate ALL of us, and make assumptions about NONE of us. 

I hope I don't need to explain too much just how wrong this is.  I mean, after all... when you try to raise awareness about Diabetes, would you be okay with a non-diabetic person saying this to you? Your Diabetes type is NOT my problem? I don't need to learn anything about it? It doesn't affect ME, so it's not important? 

Yeah... I didn't think so. Don't be a gratuitous jerk.  You can't bring POSITIVE, momentum building, LIFE CHANGING... awareness... to your TYPE of Diabetes... by being the big jerk putting other people's type down. Stop the crap. It's a LOT more harmful for YOU and your loved ones, than you can fathom. 

Listen to me... You have the right to control your destiny.  You have the right to control your carbohydrate consumption, insulin to carb ratio, exercise regimen, or when to go on oral medications... 

But you DO NOT...  Listen carefully... You do NOT have the right to control, manage, and boss around another diabetic's personal management care, or their loved one's management care.  You have the right to offer advised WHEN IT'S ASKED, but THAT'S where it ends.  You have NO RIGHT to throw your weight around and bully other people over this.  What works for you may not work for someone else, and it may ENDANGER their life.  You have NO right or business doing this.  So shut the F up and be supportive, even if you personally do NOT agree! There are many, many roads to get to Rome, and people do NOT need to pay a tollbooth of exclusivity to YOU.  Got it? 

While diabetes is NOT all the same, there are advantages, disadvantages, and dangers... to every form of diabetes, and every form of diabetes management. Please don't put down other people because you have rosy colored daydreams in your mind of what it's like on the other side of the fence.  You can say any other diabetes is better, with an infinite supply of arguments: children getting diabetes is better, because they get used to it; adults getting diabetes is better because they can more maturely understand the implications, people without medications have it easier because they do not have awful side effects, people on insulin have it easier because they can eat anything and just bolus for it, etc, etc, etc.  When you make every one of these statements, you DENY people the reality of their diabetes; their struggles, mental battles, and hardships.  

People without medications often must exercise extreme willpower to control carbohydrate levels to such a degree, that they won't spike. MOST people can't even follow a crappy Jenny Craig diet. What's worse, people without medications don't have the most choices in bringing numbers down. I mean, if you're high at 3 am, would you want to go running at that hour? 

People WITH medications are often subjected to horrible side effects: extreme gastric upset, diarrhea, potential lactic acidosis, kidney, liver, or heart damage, cancer, etc, etc.  They can bring on some of the complications we work so hard to avoid, to begin with... Along with nausea, and hypoglycemia, as well, sometimes.  Not only that, but some of these medications are ALSO injectables, so if you fear injections, it's really not much better than insulin.  

People on insulin shouldn't also eat whatever they want; they must manage their food consumption just like anyone without diabetes.  It's not a license to eat, and eat... And it's not like it's a walk in the park, either... There's hypoglycemia, and potential weight gain for many who are prone to weight gain, regardless of their type.  

Children with Diabetes do NOT have it easier just because they got Diabetes as children... Diabetes puts a HUGE stress burden on the family, parents frequently fight or get divorced, or one parent gets incredibly burdened with the total care for their child.  Not to mention, the bullying by other kids, etc., maturing at too young of an age, and NOT getting to enjoy childhood as normal children.  Often a parent may push a child incredibly hard, for the sake of advocacy. 

Adults with Diabetes have all manner of lifetime habits INGRAINED in them.  I've gotten yelled at by roommates for not using the proper "tupperware" for putting food away, or by my husband by not putting things away exactly how he likes them... Are you kidding me? This is one of the hardest things to have to change AS AN ADULT.  Life long habits that have nurtured us, and comforted us for DECADES. Also, it's pretty scary to have to face one's mortality, and it takes time to break away from denial... A young person may still have a supportive family; an adult may have limited friends, and persons they confide in. 

Also... do you remember that one heartburn commercial? You know, the "Do you want heartburn now, or later?"  How about I don't want ANY of it! It's all bad! Do not tell someone their Diabetes is NOT dangerous! Really? Do you want the danger now, or do you want it later? Is one really better than the other? Hmmm... Would you rather die as a child, leaving your family heartbroken, or would you rather die as an adult... with many traumatic complications... leaving your kids orphans? Let me think on that, for a while. NO... DIABETES IS ALL BAD.  THERE IS NO MAGICAL DIABETES WHERE THE CARE BEARS COME AND GIVE YOU HUGS. GET OVER IT.  

No juicing; no starving yourself on 600 calories a day; no raw dieting, no veganism, no NO carbing, no magical herb, plant, bird poop, or seed, from the Jababwey People, or whatever the hell, will EVER cure ANYONE'S Diabetes.  

Do NOT go around quoting studies to people to make them feel bad... that they ought to be able to cure themselves, or at least try... This means you DO NOT have the right to go telling people they need go get islet cell transplantation, or gastric bypass procedures of any kind.  These procedures, for as many studies that claim they are miracle working things, are also DANGEROUS, have LIMITED results, and are NOT a guaranteed cure for everyone.  They are Russian Roulettes. They can, potentially, leave a person with even more problems than before... and are quite frankly, PERSONAL DECISIONS, AND NONE OF YOUR BUSINESS.  A cure should do NO HARM. You have no RIGHT telling people these things will cure their Diabetes.  I don't care HOW MANY careless, unscrupulous researches, or doctors, say that it is.

Furthermore, TIGHT CONTROL is NOT a cure! Reversing neuropathy, high numbers, dizziness, blurry vision, yeast infections... are all NOT signs of a cure.  They are signs of TIGHT CONTROL.  Go ahead and eat a big piece of pie, and test... I TRIPLE DOG DARE YOU. 

When you behave like this, what kind of example are you setting for non-diabetics? How is the world supposed to treat us? What kind of example are you setting for your children? 

Listen, don't get me wrong... There are a lot of people I dislike; I don't like their methods of doing things, or their ways of carrying on, and I may yell at them, sometimes... But I will NOT... WILL NOT... encourage violence toward other diabetics, in any way, shape or form, even as a joke.  I will support EVERY DIABETIC, whether I like them or not... because this is NOT about the people I like.  This is about a HORRIBLE disease NO ONE deserves to have.  NO ONE. You will get upset at many people; you may even call them a name, or two, on your wall... But the minute you start encouraging other people to fantasize about 'bitch slapping' anyone... that's the minute you have become what's WRONG with the Diabetes community. There is NO SCENARIO in which this is even remotely OKAY.

Similarly, do NOT put down how other people raise awareness, and seek to boycott them.  Everyone has the right to dream a diabetes cure how they see fit, and everyone has the right to be a leader.  There is NO king and queen of the diabetes advocacy.  Make helpful suggestions, and raise important points... even challenge things; but DO NOT piss on people's parades and tear down their house of cards. That is NOT okay. Diabetes Awareness Month is a SPECIAL time.  Respect it. 

Diabetes is complicated; there are no simplistic answers, and simplistic solutions. We all must do what it takes to care for ourselves, and be healthy... and that can't be done with guilt, or with shame; with uneducated, misinformed doctors, or with the media spitting out every bit of nonsense or poorly done research study there is. We are ALL diabetic, in risks, in symptoms, in need for effective care; we are ALL our brother's keeper.

Diabetes awareness is not just for OTHERS to be aware of YOUR Diabetes... it's also for YOU to be aware of other diabetics as well.  Learn to stop myths in their tracks, and do not add to their buildup.  For example, if someone says to you "Oh, is Type 1 Diabetes the one you can cure with diet and exercise?," don't reply with "No, you're confusing it with Type 2 Diabetes..."  The right answer is "No, there are NO types of Diabetes right now that can be cured with diet and exercise; only some may be controlled that way."  Similarly, if someone asks you if Type 1 Diabetes is the "bad kind of Diabetes," don't say "Yes, it's the worst." 1.) It makes people feel bad, okay? No one wants to be pitied, or to have people being taught to pity others with the condition. 2.) Like I said before, really? There's no magical Pooh bear in the Hundred Acre Wood Diabetes... 3.) Just let them know it's ALL very bad, just in different ways.  There's no a single type of Diabetes I'd rather have... 

Be inclusive, and make it easy for folks to JOIN in on your conversation, whether it's on twitter, or some event you're planning... Don't make things obscure, or cliquish. We can learn so MUCH from each other, if we just keep an open mind, and an open door.  There are MANY issues that cross the borders of types... issues with making more glucose stable meals, issues with carb counting properly, issues with weight (sometimes), or developing insulin resistance (even in Type 1s)... Sometimes, we can learn from the courage, and every day management of a long time survivor of Type 1, the hope and unwavering faith of a Type 3, or from the life changing determination of a Type 2.  Sometimes, all we need is to HUG each other, when the whole world just wants to turn its back. 

At the end of the day, we are human beings who happened to get a disease they didn't want, and which has caused all kinds of havoc in our lives.  Let's take a moment for turning around and just saying 


Thank you for being there for me... Thank YOU for being 1 of 335 million who UNDERSTANDS Diabetes... and HAS MY BACK.  Let's help and educate the other 334,999,999. Let's help save lives.  


Don't just watch it, and preach it... but do it, and record your information HERE.  Your advocacy will help other diabetics have life saving medications, and education.  


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