Monday, July 14, 2014

Stop The #Dstigma & Run With The Diabetes Advocacy

There’s been a lot of talk about the stigma associated with diabetes as of late, a.k.a. #dstigma. On June 15th there was a PFDC, Johnson & Johnson twitter chat moderated by #DSMA discussing DStigma at this year's ADA that addressed the subject head on. 
Diatribe put together a great Storyify re: the #dstigma panel discussion they participated/presented on last week at FFL & why we need to discuss it.
I was helping in another FFL session so I missed this & I'm so grateful that Diatribe storified the session!
And #dstigma was brought up multiple times in regards to #DiabetesAdvocacy last week during Diabetes Hands Foundation's #MasterLab at #CWDFFL14.
Speaking of #Masterlab - Diatribe breaks down the #Masterlab via Storify, HERE.  
And Kim has a great #Masterlab debrief today over at and so does Sue over @ Diabetes Ramblings ~
And the following is my 2 cents on the subject~
I Googled the word “stigma, and this was the first thing that came up: 
Sound familiar?
Add a “d” or the word diabetes in front of the word 'stigma' to the definitions above & you’ve got #Dstigma. 

Look, none of us should feel shame because we have diabetes - but we do. 

All of us living with diabetes and regardless of the type, shouldn't feel disgraced because we bear the scarlet letter, D. But we do. 

None of us should feel that we’ve dishonored ourselves or our families - but we do. 

No PWD should feel Ignominy & opprobrium (OK, I’ll admit that I had to look both of those words up), but we do. Ignominy means public shame or disgrace & opprobrium means  harsh criticism or centure. Sound familiar? It should because I know that we’ve all felt shame, discraced or centured  - A.K.A.: Why are you checking your blood sugar in public?!” 
All you need to do take a look at how diabetes is presented in the media 90% of the time and you’ll feel shame and disgrace - Not to mention anger. 

And none of us should feel like we've we’ve failed because our pancreases and metabolisms have - But we absolutely do.
 And none of us should feel humiliated by our diabetes and what our diabetes requires us to do - but there are moments when we've all felt that.

How many times have we said “I’m sorry” to the people we love because our diabetes is behaving badly - even when we do everything right? 
And how crappy does always feeling like we have to apologize for our diabetes feel? 

The diabetes guilt and the #Dstigma it causes is an anchor around all of our necks, one that many of us have become so accustomed to wearing that we actually forget it’s there - But it drags us down none the less.  
And even if you’re not familiar with mythology, each of us can relate to Atlas, the man who carried the weight of the world on his shoulders for eternity, because we continually carry the weight of diabetes on our shoulders for what seems like an eternity. 
We perpetually find ourselves playing the role of  defense with diabetes and #dstigma - And it wears us down and beats us up on a daily basis - If we let it. 
There’s dstigma within our own community - the us verses them when it comes to type 1 verses type 2 and acknowledging that LADA 1.5’s exist. 

Here’s the thing: Every single person living with diabetes  or loving and or caring for a person with diabetes is part of the same Diabetes Family Tree, no matter the type. 
Regardless of the type, we are all part of the same D Tree - Just difference branches. 
And if we’re going advocate for diabetes and elevate #dstigma  successfully, then we must stop with the #dstigma within our own community. 

We need to unify and act as one community. 

We must work together and use our powers collectively as Diabetes Advocates to create real change on all levels re: the public, private and governments perceptions of diabetes and what living with diabetes entails.  
Lastly, if you want to stop #dstigma, educate others and advocate for real change,  
then embrace the KISS of Diabetes Advocacy , a'la Christel!
ALSO: #RockOn


Anonymous said...

I am sure this will be an unpopular comment, but I disagree. Until Type 1 gets some research funds and serious attention, we are not in this together.

The current situation has everyone else basically in it to treat, research, and accommodate type 2. We are not in this together.

That's fine. I would be happy if type 2 were cured. That might even mean that type 1 would start getting the research attention it deserves.

I would be even happier if MY diabetes were cured (I have type 1 *with* hypoglycemia unawareness). And I would be happy if the media actually knew that other types of diabetes exist aside from type 2. And I would be thrilled if people didn't automatically assume that I did it to myself when they hear I have diabetes because type 2 is all they hear in the media so it's all they know. It's getting really old.

To people whose lives are not touched by diabetes, type 2 is basically all that exists.

We are not in this together until people start treating type 1 as a disease that deserves just as much media attention and research funding... and I don't see that happening any time soon.

It sounds nice to say we're in it together. It's nice to hope for that. But the reality is that we're not. Let's not kid ourselves.

This is also why I feel it is important to rename one of the diseases. We all know they are not the same disease and type 1 is hidden under the very heavy weight of "type 2 everything." Type 1 needs acknowledgement and attention if there is ever to be a cure. As long as 1/3 of the U.S. population is at risk of or has type 2 diabetes, people will continue to barely even know type 1 exists.

There is a gross imbalance in how these diseases are being approached and that will never change as long as type 1 remains buried under type 2's media and monetary power.

k2 said...

Dear Anonymous -
Thank you for your comment - I really appreciate it. I'm sorry you have hypoglycemic unawareness - I know it sucks and I know it's a challenge.
As someone who has lived with diabetes for 36 years and comes from a family where three of six children were dx''d with t1 - as was my father, two of his sisters, my cousin and my nephew and who has lived through at least two (or is three?) different name changes of her type 1 diabetes, I understand your POV, and at one time I shared it.

But with age comes wisdom and I've learned that bashing others for having a different type of diabetes doesn't help, it actually hurts - And it's wrong.
If I want the media to get the diabetes facts correct - Then I need reach out and make sure they get the diabetes facts re: every type of diabetes.
I struggle with people people thinking type 1 only happens to children and that somehow we magically grow out of it once we turn 18 - So I reach out and show them all the face of diabetes - and I will continue to do so.
Groups like JDRF, City of Hope, Dr Faustman, the DRI certainly show me that there is research being done re the cure for type 1 diabetes - And like you I would "thrilled" if they were to find one - but I'm not going to blame others because a cure hasn't been found yet.
And I'm also happy, thrilled and look forward to trials for The Bionic Pancreas are giving people very real options that will make all of our lives better until a cure is found. I'm all about option - In life and life with diabetes.
Do all of the above need funding? Indeed they do - And I do my best to promote and procure funds so that all of our lives can be better.
But regardless of the type, "we are all in this together.'
While we may be on different branches, we are all a part of the same Diabetes Family Tree and I choose to learn from and connect with my lada 1.5 and t2 compadres because they ARE part of my diabetes family and I learn from them every single day.
If we are going put a #Dstigma on our fellow PWDs, then how do we expect to break the public cycle of #Dstigma?
And FTR: I always welcome opposing points of view on my blog - But I'd appreciate if you put name along side your argument next time.
Anyone can hide under the Anonymous moniker - but attaching your name to your beliefs garners a lot more respect, even if we don't see eye to eye on the matter at hand.
Kelly K

Alanna said...

"It sounds nice to say we're in it together. It's nice to hope for that. But the reality is that we're not. Let's not kid ourselves."

It's people like you that are pushing stigma forward. I also have T1D with hypoglycemia unawareness. You're still living with diabetes.

You've GOT to realize that T1 is a tiny portion of people living with diabetes, and if people like you hide behind the anonymous moniker and try and break the groups up and section them out there will never be any sort of unity.

You feel under representated? Volunteer or fundraise for JDRF, DRI, Children with Diabetes, or any of the other T1 focused groups. Please don't sit there and complain there isn't enough being done, if you aren't doing anything yourself.

k2 said...

Anonymous -
I also lost my sister Debbie to type 1 complications in 1991 - She was 34 years old.
And apologies re: the typos in my comment - I typed out my comment on my iPad & clearly some of the keystrokes didn't take.

Sue Rericha said...

Dear Anonymous,

I am one of those Type 2s that you don't feel should be working with Type 1s. I'm a Type 2 that donates to JDRF every chance I can. A Type 2 that works to educate others about Type 1. A Type 2 that has more Type 1 online friends than Type 2. A Type 2 that reads as much about Type 1 as I can to be well educated. A Type 2 who reaches out to the Type 1 children in my school.

I am a Type 2 that sees the power in uniting for a cause.

Yes, I know that Type 2 gets more attention. Majority populations usually do. I don't agree with that though I won't apologize either.

Have you heard of Relay for Life? It's a fundraiser for *every* type of cancer. The organization understands the concept of the power of many working together. I don't hear cancer patients complaining about the other types. You don't hear a patient with prostate cancer complaining about the attention breast cancer receives.

Should we rename cancers in the same way you suggest renaming diabetes? Absolutely not! Just like prostate cancer, breast cancer, and brain cancer are different types of cancer with their own causes and characteristics, so are Type 1, Type 2, and gestational diabetes - They are all different types of diabetes with different causes and characteristics.

Working together we are stronger. To use a well known phrase, "United we stand, divided we fall."

Until there is a cure FOR ALL...

Ginger Vieira said...

As a type 1 myself, sure it would be nifty if all the monies in the world went to curing my own disease...right? But considering that nearly 30 million people in the USA live with type 2 diabetes and less than 2 million people live with type 1 diabetes, it makes sense that there is less money being directed towards type 1. Regardless, there is still a great deal of funding being targeted on type 1 research...all over the world! And for that, I feel fortunate. I don't see how funding for type 1 should result in resentment for those with type 2 or in any way diminish the respect and attention that type of diabetes deserves.