Friday, March 14, 2014

An Open Letter to Parents of Children with Type 1 Diabetes


It is a terrible terrible thing.

Especially when it is for something that we have little control over.

When our children were diagnosed, I know, buried deep inside all of us, there was shame.  Shame that our children would have this word attached to them for the rest of their lives.


But then the doctors explained to us that it was autoimmune.  That it “wasn’t our fault.”  That it “wasn’t their fault.”

So we made it our battle cry.

“It isn’t anyone’s fault!  It is autoimmune!  It isn’t Type 2 Diabetes!”

“Because when you have Type 2 Diabetes…it is your fault.”

Ok.  Maybe we didn’t say that last line.  But we imply it all of the time.

To save face for our children and our families we throw other families under the bus.

I don’t think we realize we are doing it sometimes.  I understand that in almost every case we are simply defending the people that are most precious to us.  We are mother bears, HEAR. US. ROAR…that it isn’t Type 2.

I’m not implying that D parents need to bear the cross of the Type 2 Community.  And I’m certainly not implying the entire culture of shame is our fault, because certainly society as a whole, including the medical community and the media have projectile vomited blame and shame all over the words “Type 2 Diabetes.”

Maybe it’s not our fault, and maybe it’s none of our business.  Yet.  What if someone we love and care for deeply does get Type 2 Diabetes?  What then?

Are you going to shame them and tell them it is entirely their fault?  Are you going to sit back and watch them get brushed aside by the medical system while their bodies are damaged and ruined by this disease?

Shame stops people from talking about things.

Shame stops people from advocating for themselves.

Shame makes people HIDE their condition. 

Shame makes us destroy ourselves, not help ourselves.

Imagine a world where someone could get a diagnosis, and instead of doctors telling them to stop stuffing food in their mouths, they were given specific battle plans, the correct tools to help, and more than anything…empathy.  Empathy and understanding.

Imagine a person telling their friends they have Type 2 Diabetes, and their friends knowing how devastating a diagnosis it is, and instead of blaming, saying, “What can I do to help?  What can I learn?  I’m so sorry, I know how scary this is for you.”

Nearly 10% of the entire US population has diabetes, including over 25% of seniors.  Chances are you know plenty of people with Type 2 Diabetes, and you have no idea, because they are in the closet.  Also, according to the CDC over 36% of Adults in the U.S. are obese.  But yet, only 10% of The U.S. population has Type 2.  There is obviously more to the story.

The fact is, people with Type 2 can do all the right things, and STILL have diabetes.  Losing weight and becoming healthy doesn’t always change things for them.  We are finding out now that there are many other factors that can contribute to Type 2.  Not just weight.  Not even always weight.  I know many very thin people with Type 2. Maybe people can change their lifestyle and are able to use less medication, but they are on medication none the less, and still run the risk of complications.

Bennet wrote THIS completely enlightening article.  In it he points out the astronomical Emergency Room costs due to hypo episodes with people with Type 2.  These staggering numbers show that the Type 2 Population isn’t getting the care and attention they need.  They aren’t educated properly on their meds, instead they're told, “Watch your diet, lose weight, and take this extremely complicated medicine that we are going to pretend isn’t complicated at all.  Now go away.”  And sure, there are millions who go home and don’t take their meds.  Why?  Two possible theories:  They are ashamed, in denial and want to pretend it isn’t happening.  And also because they weren’t told exactly what is going on in their bodies, like what high blood sugars are actually doing to their systems. They aren’t given an entire team like our children are.  Many don’t even get to see an endocrinologist.

But I digress.  If we can’t be sympathetic to the plight of those with Type 2, maybe we can find a way to not throw that population to the lions.  Maybe we can simply state that Type 2 is Metabolic and Type 1 is Autoimmune.  Maybe we can explain that out of all the people with Diabetes out there, those with Type 1 only make up about 5% of that population.  That we are a little different than other types of diabetes.  And go from there.

Because if you think your outlook isn’t going to make a difference, you are wrong.  One person CAN make a difference.

I'm not pointing fingers here.  I was just as guilty in the shaming department years ago.  But then I met people with Type 2.  Brave, amazing people who burst out of the closet and said, "This disease isn't all that it seems.  It is much harder than it looks.  I'm doing my best but my journey is hard."  And now I call these people my friends and I'm learning things I had no idea about.  Shocking things that completely threw my entire diabetes theology for a loop.

People with Type 2 Diabetes are PEOPLE.  They have feelings.  They are wonderful, human people doing the best they can with what they’ve got.

Our children are not better than them.

We can’t make the people with Type 2 the martyr for our children’s disease.

It isn’t right.

Let’s help put out the fires of shame by changing our outlook.

Think of the Type 2 Community as our neighbors.  Let’s tear down the fences instead of fortifying them with barbed wire.

With all sincerity, 

(This post inspired by Sara’s post HERE and Mike’s post HERE.)


  1. I have said it before, I will say it again.

    Love Ya / Mean It.

  2. Beautifully written, Meri, and very valid. I'm so grateful you spoke up to remind us all that first and foremost, we are all human beings. No one deserves to be shamed.
    xo Jules

  3. Awesome post. The blaming/shaming has got to stop. It's counterproductive and mean.

  4. Thank you, thank you. We need more empathy! I'll also add this: I want there to be a cure for all types of diabetes, not just the type that I have. And if that means working with amazing Type 2s to help get us there? Fine by me.

  5. Meri, thank you for this post. Beautifully stated, as always.
    As someone whose technical diagnosis is insulin-dependent Type 2 -I'm a bit in the gray area ;) - I can get very sad and upset when I see so much vitriol directed at us by people who I thought would understand. But posts like yours and Mike's and Sara's have opened my eyes that it's not everyone, it's not all bad. Thank you.


  6. My in-laws have type 2 and knew nothing about glucogan. When my FIL had a severe hypo episode where he was unresponsive we suggested it and their doctor said he didn't need it.

  7. I put the blame for most of this shame culture on the public health messages we've been bombarded with for ages about "diabesity" and prevention etc etc etc. As a group of people I say to the barricades together to fight the do-gooders with their publicly-funded campaigns of shame that do nothing 4 prevention but plenty to damage pwd. I wrote about advocacy for ALL pwd and taking on the blamers and shamers on World Diabetes Day last year

  8. Excellent post Meri! All of our voices together might be enough to drown out some of the blamers and shamers!

  9. This is dad has had type 2 for 25+ years and had been insulin dependent for at least half that time. My daughter has been type 1 for 5 months, and it seems like we've had more education in that time than he ever has.

  10. This is so.....thoughtful, amazing, insightful.....

  11. Thank you so much! <3
    Linda Malia

  12. Thank you, Meri! I really appreciate you reaching out to those of us with Type 2. If we take the energy from arguing toward working together to find a cure, think about how much more we can accomplish. I'm thankful for everyone in the DOC. I pray for a cure for ALL types of diabetes!

  13. Almost everyday I want to scream "DIABETES IS NO ONE'S FAULT!" When I hear even people living in the type 1 world repeat the "control with diet" or "they could prevent it" type 2 accusatory garbage, this education thing seems so overwhelming. I can't think of one other disease that gets mocked and degraded like diabetes. One person at a time.
    I, too, know someone with type two that started using insulin and were sent home with a potentially fatal drug with no education and no emergency instructions. Infuriating!

  14. This is the way I see the post by Meri Schuhmacher. Life with diabetes is not easy no matter who you are or how you got it. We should all raise one another up in love and support while not passing any judgement as we do not know the circumstances of others as they do not know ours. Judgement gets passed on those of us dealing with type 1 every day. We as a collective unit are not progressing forward by passing judgement on anyone. Yes, type 1 life is HARD, but if we focus on "my" disease is harder than yours, we will get no where. I signed the petition as well as do believe type 1 and type 2 are far to generic. However, I don't believe there is an easy solution. "Real magic in relationships means an absence of judgement by others." by Wayne Dyer

  15. It's time we join together to help educate the general public so that no one is shamed by a disease that they would prefer not to have!

  16. never be ashamed , a disease is not anyone's fault.

    For us, this is autism ... keep in mind that you are not responsible for diabetes.


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