Community Table: Why #LanguageMatters
Community Table is presented by the JDRF-Beyond Type 1 Alliance and made possible with support from Abbott Diabetes Care, Dexcom, Lilly, MannKind, Medtronic, Omnipod, Roche Diabetes Care and Tandem, active partners of Beyond Type 1 at the time of publication.
During our 11th Community Table discussion in 2021, Beyond Type 1 sat down with a group of experts and community members to discuss why language matters for people with both type 1 and type 2 diabetes, and share helpful resources and personal perspectives. Watch the discussion in full!
- Sarah Mart, who served as the moderator for this event and has had type 1 diabetes for 41 years, works at the United States-based nonprofit, Diabetes Sisters.
- Renza Scibilia, who has had type 1 diabetes for 23 years, is the manager of type 1 diabetes and communities at Diabetes Australia.
- CJ Walker, who has had type 2 diabetes since 2019, is a freelance writer for several different diabetes websites and runs the blog, The Genetic Diabetic.
- Joy Cornthwaite, MS RD LD CDE, is a dietitian and certified diabetes care and education specialist.
Partial transcript of the conversation below, edited for content + clarity.
What has your experience been like with diabetes?
I had symptoms, went to my general practitioner (GP), she sent me to have a blood test, and I was diagnosed a few days later.
My GP called me, dropped the F-bomb, and told me, “You have type 1 diabetes.” I had no idea what that meant, but she sent me to see an endocrinologist that day. I can still remember the threats, the way that he described diabetes, and the images that he showed me. He was lovely, but the fear and threats stuck with me, and it paralyzed me with fear for a very long time.
CJ: My diagnosis was unexpected, although I did have a family history on both sides.
I was at a doctor’s appointment for a follow-up and my blood sugar was 300. I went to another follow-up and that’s when I was diagnosed with type 2 diabetes. I quickly sprung into action; I changed my lifestyle, my diet and physical activity. Right now, I am doing well. My numbers are in range, and I am really prioritizing myself and my needs to make sure that I’m taking care of myself and managing diabetes. I encourage others to do the same.
Why is language so critical when it comes to care and wellbeing for people living with diabetes?
CJ: For me, language is more than words. There are times where it also means how you say things, how you write things and depending on how you choose to use that language that can either motivate them or it can tear them down. If a person with diabetes is torn down, then chances are they’re not going to really be able to manage their diabetes the best way that they can.
Joy: I have a lot of loved ones who have both type 1 and type 2 diabetes. As a kid, I saw my family members being disrespected, belittled and questioned about their dedication and their motivation to self-care and to health. Even as a child sitting next to a family member while they were in a doctor’s office, I could feel that it wasn’t a safe space to talk about your concerns, or a trusted place to talk about your hopes and dreams related to your life and how your health is associated with that.
The fact that language didn’t matter then very much shaped my desire and my passion to make sure that the language we use when caring for people is one of empathy and one that creates a safe and wonderful space. I want to be an empathetic clinician that helps guide a person to the journey wherein they live their best life, they feel the best and they can do all the things with their family members, because I don’t feel that that was provided for my own family.
Share a time you experienced a hurtful or harmful comment that negatively impacted you, and/or your perception of diabetes.
CJ: I was in an online diabetes community for type 2 diabetes, and one question came up about obesity and the link to type 2 diabetes. When I explained to them that wasn’t my case and my experience was totally different, the moderator proceeded to say, “I hope you don’t have type 1.”
That really triggered me a bit because that automatically assumes that you’re type 2. I started to imagine what it would be like for people dealing with obesity that are also type 1, and that really shifted my thinking quite a bit.
Renza: We recently had a terrible show on TV called Australia’s Health Revolution, and it was presented by a GP from the UK. He came to tell Australians that we were all unhealthy. I wrote a piece about it because I was so upset at the stigmatizing way that he was speaking about type 2 diabetes.
This isn’t actually something that I felt was aimed at me, but it felt like an attack on the community, I don’t subscribe to the idea that “My diabetes is worse than yours, or my diabetes is more complex.” All diabetes sucks, bottom line, and all diabetes is serious.