Language (and the use of language by panel members) was one of the buzzwords at the DTM last month, even when it wasn't the main topic - and that’s a great thing.
#LanguageMatters and words have weight - being sensitive about the language used when discussing patients, whether or not they are in present in the room, is KEY.
Words like (but not limited to) non-compliant, non-adherence, and labeling blood glucose as good Vs bad, are all self-defeating terms that have the ability to keep people with diabetes down, instead of empowering and allowing them to take ownership of their diabetes.
How people with diabetes are discussed in real-time by diabetes healthcare providers, industry and diabetes tech manufacturers (and the technology they create) not only matters, it’s crucial.
At the beginning of the first workshop on Thursday morning, CDE, Deb Greenwood kicked off the discussion by pointing out that “adherence, is something a provider wants a person to do; it’s not a patient-centric term,” and suggested changing the title of this session to “treatment choices.”
I was all for it. I say, retire words like adherence and non-compliance from the diabetes vernacular!
Diabetes is a disease that requires so much from those of us who live with it, our families, and our healthcare teams.
People with diabetes are frequently judged more harshly by society, and the language often used to describe them and/or their behavior isn’t always kind.
Diabetes has become a punchline and an Instagram hashtag used to describe sugary desserts - and unfortunately, that’s how it’s perceived by the majority of the public - instead of the multi-faceted and complicated disease it is.
People with diabetes are often referred to as being non-compliant, non-adherent, lacking control, continually ignoring advice, and often too lazy and stubborn to change their behaviors.
Is it any wonder we fear judgement and struggle emotionally and physiologically when it comes to managing our disease?
Key Communication Barriers In Diabetes Mentioned
Overall, remember that #LanguageMatters.
English As A Second Language
When English is the second language of the PWD, important information can get lost in translation and frustration.
What Does That Mean?
Diabetes has its own language, and many living with diabetes don’t speak the dialect or understand the terms healthcare providers use when discussing their diabetes or D technology - and are often too embarrassed to admit it.
Example: many people are given a blood glucose meter at their healthcare providers office, but are never shown how to use it. They get their test strip Rx filled, go home and have no idea what to do next. So they do nothing.
Depression is a huge factor in PWDs sticking with diabetes treatments. Living with a chronic illness like diabetes can make you depressed, and living with depression makes self-care difficult. Depression and diabetes have the potential to become a vicious cycle.
Healthcare professionals recognizing depression symptoms and encouraging patients to seek treatment for mental health leads to better managed diabetes.
People with diabetes aren't choosing 'non-adherence' because they want to. They are overwhelmed by what diabetes as a whole represents and they are terrified.
Better Communication Tools Make Everyone Happy
If you want people to become embrace diabetes technology and apps, don’t define them by their data.
It was pointed out in several sessions that it is the person with diabetes who makes the decision to share their data, so don’t judge them when they do.
Every number has a story - the person and the data together tell that story - so listen.
It’s not rocket science. Diabetes tech (including apps) created with person first, empowering language will be embraced. Those without, won’t.
Healthcare professionals should be pointing out a PWD’s strengths, before focusing on the PWD’s “diabetes management challenges.”
Diabetes or not, everybody needs encouragement.
My Endo always starts off by pointing out the positives in my lab work.
Because of that, I’m calmer and better able to focus, process and incorporate his suggestions re: improvements to my diabetes management.
“Nudging toward self-care comes in many forms,” stated, Dr. Mark Clements from Children’s Mercy Hospital.
And a nudge in the right direction is recommending Online and Offline Peer Support - this would be when a slide discussing the DOC (Diabetes Online Community) was shown and mentioned directly!
Diabetes blogs, online communities, and Twitter chats all help people with diabetes overcome the isolation they often feel. Encouragement from D peers leads to PWDs making positive choices and feeling empowered! RIGHT ON.
HCP, industry, and tech realizing that data overload is thing.
Lastly, people with diabetes are human beings - treating them as such in discussions about them and remember that face-to-face makes all the difference.