Tuesday, January 29, 2013

You Want To Know What's Exhausting? Living With Diabetes & Diabetes Media Muck - Ups!

So the wonderful Melissa Baland Lee from Sweetly Voiced posted a link to a Chicago news report on facebook this weekend, about a 7 year old daughter saved her mom with diabetes - And the less then pleasant exchange she and other DOCers had with the reporter on twitter. Melissa originally found out about the story from the fabulous Christina Ghosn from Stick With It Sugar, And damn if it didn't create quite a discussion!!!

Did I mention that these ladies, ROCK? 

The mom in the story (Jennifer Sheridan) a type 1, went into insulin shock while driving - A nightmare come to life for all of us living with diabetes.  And her young daughter Alexsandra  reached for the keys in the ignition and turned of the car before it hit a tree. 

And that’s awesome - Alexsandra is a total SHERO in all dimensions and she absolutely should be celebrated!

SIDEBAR: HERE'S the link to the story with the proper diabetes corrections. 

I LOVE seeing positive and accurate stories about diabetes  - and people with diabetes in the news -Movies, too.
Though I’ve never seen a movie that’s accurately nailed diabetes yet, but I digress.  

But unfortunately in this particular story, the reporter included some deadly and false info re: diabetes that made it to air. 
 Most notably the reporter Diane Pathieu, originally stated (the piece has since been edited) that the woman was in insulin shock  and “was in need of insulin.”  That story was tweeted and facebooked and put on the station’s website. 

FYI: i know I don't have to tell anyone living with type 1 diabetes this, but with that being said: 

And it's a mistake that so many people make - Including people I know and love - And we've all had correct well meaning friends on coworkers about low blood sugars and insulin because our lives depend on the right information getting out there in the event that we are unable to give that information ourselves. 

The Reporter in question utilizes Social Media to promote her stories to the masses and connect and engage with her audience,  and develop a following in the community she represents.  And while I don’t know it for a fact, I’m sure she hopes that her stories will be picked up by other media outlets -  

And I totally get that. 

We all use Social Media for those reasons need to be prepared for the accolades and the criticisms, both constructive and otherwise. 

Social Media is just that - It’s social  - It’s engaging in a conversation, developing relationships and allows our voices to be heard..... and our stories to be told. 
And when a television reporter, whose reach is immediate and who’s words are taken as fact by her viewing public,  makes a mistake, she or he needs to correct them - And own up to them - Especially when those mistakes can be deadly.

 Instead of engaging in a conversation with the Diabetes On-line community via  twitter, Diane told those who tried to give her constructive criticism that that they were wrong, and that “we should agree to disagree.” She threatened to block anyone who disagreed with her and she did - Including me. 

At one point she tweeted that ‘the conversation was exhausting’
And while she didn’t tweet that statement to me - I twitterrupted and let her know that living with diabetes was exhausting - As was dealing with diabetes media mistakes. And like I said, she blocked me - And without so much as a responding tweet.  

Her line about “ the conversation being exhausting” just wouldn’t leave my head - Because quite frankly, Girlfriend had no clue as to what “exhausting”  really is.

Exhausting is living with a chronic illness 24X7, 365 days a year, for 35 years. 

Exhausting is testing your blood sugars between 7 and 12 times a day, every day - no matter what. 

Exhausting is calculating the carbs and insulin to cover said carbs, for every piece of food or drink that you put in your mouth. Same goes for injecting and calculating insulin to lower a high blood sugar.

Exhausting is being a parent who gets up two or three times a night to check child’s (or children's’) blood sugars every, single nigh. 

Exhausting is being spouse or significant other of a  PWD (person with diabetes) who worries constantly about their life partner in life who lives diabetes.

Exhausting is Injecting (or wearing an insulin pump) every single day of your life in to order live. 

Exhausting is being afraid of your future but pushing past the fear and living a great life despite a broken pancreas and a crappy family history.

Exhausting is having to do all of the above because we don’t have a choice. 

Diabetes is f*c$ing exhausting

Everything that diabetes requires us is to do is exhausting - and necessary and we do it. EVERY DAY,. 

But what’s really exhausting and incredibly maddening is having to take the time to correct the media when the report  deadly inaccuracies on a story about diabetes. 

Because diabetes is not a one size fits all disease and mistakes when it comes treating diabetes are deadly. 

Reporting that someone was in need of insulin when they has a low blood sugar puts countless lives in danger. 

Giving insulin to some who is experiencing low blood shock  will kill them or put them in a coma. 
Does the name Sunny Von Bulow ring a bell? 

Many in the diabetes on-line community, called; emailed, facebooked and sent tweets to the station regarding the story, including me. 

I left the Station’s General Manager a voice message on Sunday night, and he not only called me back on Monday, he'd pulled the video from the website promised to go over the story with a fine comb and correct any of the misleading statements. And he promised to  talk with the reporter about the all the issues.... And he also promised to call me back. 

And you know what? He did. 

We spoke about an hour ago and I was impressed.  The GM wanted to make sure the right facts were in the the story before he reposted the video on their website and he told me his news organization had reached out to the Chicago JDRF & ADA regarding the story. He also felt that it reinforced the fact that diabetes and reporting on diabetes is more complex than most people think. He wanted to know how insulin pumps actually worked and talked about that in great  detail  - And we talked about all the work that being on an insulin pump required. 

I explained to him what a CGM was and why it was important. 

I also explained that every person living with type 1 has a fear that some one will try and give us insulin if we’re incapacitated from a low. And that the public takes what television reporters say as fact - even when what they say is far from the facts.
I mentioned the DiabetesAdvocates and the quest for "the media to get diabetes right."  we talked about diabetes in the media. 

And I appreciated his professionalism and how swiftly he rectified the problem. 

I pointed out that story was picked up by other media outlets, and that while the original diabetes mistakes were corrected, they were replaced by new ones. 

One variation of the story said that the mom had type 2 and that insulin pumps eliminate low blood sugars, and for some reason, other news outlets referred to Jennifer as having “an insulin pump installed,” you know, like a transmission. 

SIDEBAR: The NY Daily News does have a version of the story that was much more on point - Kudos to Erik Ortiz for doing his diabetes research!

And lastly, I mentioned that Alexsandra Sheridan did a wonderfully and brave thing in saving her mother and herself from a car crash caused by a low blood sugar. 

This brave little girl treated her mother's low and comforted her while they waited for the ambulance. 

And instead of focusing on that - Those of us in the Diabetes On-line Community were forced to focus on the mistakes in the piece -made by the media -  And it didn't have to be that way. And is shouldn't have to be that way - EVER.

The media should take the time todo the research and get diabetes right in any and all stories about diabetes. 

Living with diabetes is indeed exhausting.... And trying to correct diabetes myths and mistakes  in both the media and the public’s eye is incredibly exhausting - And both diabetes and the diabetes mistakes in the media are never ending. 


Cara said...

Thank you for being you Kelly! You stood up & took action. You raised your voice. I'm sad that the reporter refused to admit to, or even entertain the fact that she could be wrong.

Tonya said...


Tonya said...

BRAVO!! and THANK YOU, Kelly!!

Alecia said...

You did such an incredible job telling relating this whole saga. The GM calling you back and your ability to explain not only the seriousness of the situation but the technologies involved in D care leaves me slightly less frustrated and more hopeful! Thanks for fighting the fight! xo

NikDuck said...

Thanks for speaking up and fighting for them to be more accurate in their reporting! Uggh...all the false info about diabetes that is out there is exhausting!!

Meri said...

Standing ovation, Kelly! Bravo! Bravo!

Scott E said...

I'm proud of you for going beyond the keyboard and spending your precious time on the phone to right a wrong. That shows real commitment. Nicely done! (Now you can rest. You must be ... exhausted)

Allison Nimlos said...

Personally, I think you should get byline credit for that update article. You rock, lady!

Ilana Lucas said...

This is truly excellent. I might have to share it around. Keep up the good work!

Sarah said...

thank you for taking the time to take this task on. this is the part I find exhausting, because I focus so much time/energy/emotion on my children (one of which has t1d) I forget how I also need to help make the road he will eventually travel on without me better. thank you for doing that. this matters, the truth and accurate facts matter. so, again a million times over thanks.
ps on a side note my husband has t1d, too - his most frustrating moment was when he got questioned from a police officer after giving a shot, as if he was doing drugs, the officer said, "you're too healthy and young to be diabetic." It's been over 20 yrs and he hasn't forgotten that moment, it was solidified after that the he not only got a dx of having t1d but also became an advocate for himself and all others with d.
have a lovely day :)

Scott K. Johnson said...

Wait - you mean you guys don't have your insulin pumps installed? Shoot! I hope it's not too late for them to get it out of me...

Kidding, of course!

Thank you, Kelly, for all that you do. We appreciate it!

Penny said...

Great job, Kel! I thought SHE was exhausting with all her defensiveness. That tired me out. I also thought she was rude. Thanks for communicating with the GM about it - sounds like it went great!

Kelly said...

Awesome, as always :)

sandy said...

God Bless you Kelly for advocating for ALL of us! You are a true inspiration!

Mike Hoskins said...

I'm behind on my blog reading and commenting thanks to a crazy week, but finally getting back to this topic after seeing it on Twitter... Kelly, THANK YOU so much for doing what you did here and talking at length with that station's GM. I'm appalled and even personally embarrased that a fellow "journalist" like that reporter responded that way. While it's D-101 for us about insulin and low blood sugars, I get that it may not be as clear to others; and these mistakes can happen. But her response is just inexcusable in both professional journalism terms as well as how we're all interacting now with social media. Your work on this, and of course Melissa and the others, is awesome. Wish it hadn't been needed, but so glad you were on the ball.