Candy, 21 has lived with type 1 since she was two years old. She grew up in Shanghai and Singapore and is currently living in London and studying at The London School of Economics. She uses an insulin pump and flash glucose monitoring to manage her condition.
How important do you think language is when talking to people with type 1 about their condition? What effect can language have on the person with type 1?
I think language is a really important factor with type 1. A number of things should be taken into consideration when thinking about communication about type 1. People who have lived with the condition may need a different approach to those who have been recently diagnosed. Perhaps someone who has had the condition all their lives, (like me), sees the condition as part of themselves but someone with a recent diagnosis sees the condition as something to be lived with. The term ‘diabetic’ is a good example of a word that I see used more by people who have had type 1 all their lives.
Could you talk about any good /bad experiences with healthcare professionals’ (HCPs’) language as someone living with type 1?
My worst experience would be the first appointment I had in the UK when I came here to study. The doctor saw my HbA1c result and informed me that if my blood glucose didn’t get better then he’d take my insulin pump away. I was shocked. I had never before been spoken to so bluntly and harshly. I know that it’s very common for people with type 1 to dread getting their HbA1c result and experiences like the one I had shows why. It seems like a test and the odds of passing are against us.
My endocrinologist in Singapore has adopted his style of communication to match how I like to be talked to which means I leave appointments with him feeling positive and motivated. I like knowing the science behind all the decisions that I make to manage blood glucose levels and he explains it to me. For instance he is happy to explain what is happening in the body when I eat certain foods and I use this knowledge to make more informed bolusing decisions. I never feel like I am being judged when I see him. He speaks to me as an equal.
How have you used your experiences living with type 1 to shape the way that you talk to others with the condition?
Before I came to the UK I didn’t know many people with type 1 but I have met more since living in London. I think it is important to adapt your language to make the person you’re talking to feel at ease. I try not to use the term ‘diabetic’ because I know that some people aren’t fond of it. I recently spoke to a newly diagnosed girl at my university and stayed away from technical language as I didn’t want to overwhelm her. However, if I was speaking to someone who had been living with type 1 for a while, I would feel more at ease using technical language.
What would you want a healthcare professional to consider when talking to someone with type 1?
Remember that patients are more than their condition. There is a person behind all the numbers. I’d like to see a more holistic approach when HCPs speak to people with type 1. After all, your blood glucose is affected by pretty much everything that goes on in your life, including feelings and emotions! Building up a bigger picture of a person beyond their condition can give rise to better solutions for improved blood glucose management. Ultimately when I go into an appointment I want to feel like it’s me and the HCP working together to manage my type 1. It’s in both of our interests to do so.
Download the Language Matters publication
Language Matters is available to download at the NHS England website.