The Language and Stigma of Diabetes: how we see ourselves matters more than we think
Diabetes doesn’t define you – it can make you stronger!
What have others said about your diabetes? What do you believe about yourself? What type of language do you use when talking about it? Does it even matter? The way you think of yourself as a person with diabetes, and how you describe yourself can have a big impact on your level of happiness, depression, and even your A1c.
When I was first diagnosed with Type 1 back in 2000, I didn’t fully understand my grandma’s reaction, “Oh no, not sugar!”
She seemed devastated by the news and grieved my diagnoses for years. Granted, her experience with diabetes up until that time was fairly grim; her grandmother’s sister died suddenly at age 16 with what we now think was undiagnosed Type 1, her nephew had Type 1 and was in and out of the hospital in DKA, and even though my dad, her son, had great Type 1 management, she saw the difficulties of using the older insulins such as Ultralente, NPH and Regular.
While well-meaning, her reaction could have easily had a negative effect on me. Luckily, my parents had a different reaction, and helped set me on a path of not letting my diabetes hold me back or define me. I’ll always be grateful to them for their attitudes and they support along the way.
A few years ago, the AADE and the ADA came out with suggested language changes to help people with diabetes feel more empowered. They found that making small changes to the language we use around diabetes can have a big impact on many things, including stress levels, care, and overall outcomes.
What are these changes?
*This image was taken from a blogpost from diatribe (https://diatribe.org/diabetes-language-recommendations-how-avoid-judgment-and-stigma)
This leads me to a few thoughts:
First, if you haven’t always made wise choices around your diabetes, and even if you have some complications related to those choices, you can feel empowered knowing that you are in control of your life and your diabetes.
You can believe whatever you want to about who you are as a person with diabetes, and you have the power to guide your future. You are first and foremost you, and diabetes is just along for the ride. I personally see my diabetes as a fact about me, just like I have brown hair and blue eyes.
Second, diabetes doesn’t have to slow you down or make you not achieve your dreams.
It will most likely take more work and planning, but almost anything is achievable. I’ve taken great satisfaction knowing that I’ve been able to achieve some amazing things in my life with my diabetes in tow.
Lastly, you’re part of one of the most amazing communities in the world!
There are so many resources available to you to help you along this journey and ultimately know that you’re not alone! As I work with clients, one of the greatest resources and helps is finding a community of others with diabetes. With social media it’s easy to find a tribe, whether local or around the world, to relate with. We’re all in this together and are here to lift each other up.
I’ve been a type 1 diabetic for 10+ years. I appreciate the desire to reduce diabetes stigma, but I find some of this language policing to be a waste of time and just an extra burden on me. Now I am supposed to worry over minor differences in language on top of dealing with the disease? “diabetic” means the same thing as “person with diabetes” and is shorter to say. I feel similarly about “test” vs “check”, “nondiabetic” and “normal”. It’s not that the things in the 3rd column are completely untrue, it’s that moving to these new words won’t remove the stigma, it will just shift it to the new words. People are really great about figuring out “codes” and it’ll just become a joke.
I think that we’ll do much better as a community to educate people on what Type 1 diabetes is than we will to try and change the language their using when they harbor no ill intent. People will just get defensive and shut down. Pick your battles wisely.
HI Alan,
thanks for your feedback, I’m personally someone who doesn’t much matter what you call diabetes or me, but it’s always a good reminder that some people have been hurt with language, and particularly young and newly diagnosed persons can be hurt with careless language. Great perspective!