When I’m asked what is it like to live with diabetes, I usually downplay it. “It’s not so bad, I can eat whatever I want…it doesn’t stop me doing anything…you get used to it…it could be worse” are some of my responses. My diabetes isn’t going away and I need to just deal with it. And the easiest way to do that is to tell myself it isn’t that bad.

However, I’ve recently been thinking a lot about how living with diabetes affects me. I was presenting at a conference in Galway, Ireland last week and as a researcher with type 1 diabetes, the organisers asked to talk to local newspaper to promote the conference. The conference was aimed at healthcare professionals, researchers, and people with diabetes. I spoke with the journalist on the phone and afterwards I felt slightly bad. I think I downplayed the struggles associated with diabetes and in terms of promoting the conference, I probably should have made it sound more dramatic. Anyway, I soon forgot about this train of thought until I was at the conference.

A lady with type 1 diabetes who had just graduated from university spoke about her role as part of a young adult panel which is informing ongoing diabetes research in Ireland. She went on to passionately speak about the difficulties associated living with diabetes. As she showed emotion, the audience could understand the difficulties she experienced living with type 1 diabetes. I was thankful to be only speaking about my research in diabetes at the conference, not my personal experiences. I know myself I would have become struggled to hide my emotions if that was the case, as it had happened in the past.

About five years ago I volunteered for a study. I was to be interviewed by a health psychologist about being a young adult living with type 1 diabetes. From what I can remember, the interviewer asked normal questions about difficulties living with diabetes and the support I received. To the best of my knowledge, this is the only time I’ve sat in a room and talked to someone about how hard it is to live with diabetes. How isolating it is and how much of a burden it can be. The only time in my life I’ve had the time to think about the difficulties and speak aloud about them. The only time I thought deeply about how frustrating diabetes can be and how cruel it is. I question why am I the only person I know who has to deal with this shit, literally I’m one in a hundred.

After the conference in Galway, I began to question how I think about diabetes. There are definitely some positives. I want to work in a diabetes-related job, diabetes interests me immensely, and I think there are so many things in the diabetes world that can be done better than its inspired me to start The Type 1 Diabetes Project. I want to understand how people manage their diabetes and come up with new ideas to help people. But there is also the negative side. The burden of diabetes, the frustration, the effect on our physical health and mental health. Should I stop downplaying the burden of living with diabetes? When people ask what is it like, should I respond “it’s really hard” or as one of our survey respondents commented “have you ever tried running across a tightrope blindfolded during a hurricane?”

Which ever way I choose to respond, language is very important. I read an article yesterday about important work undertaken by Prof Jane Speight and Team Novo Nordisk to reduce stigma around type 1 diabetes and the importance of words. We don’t “suffer” from diabetes, we “live with” diabetes. I try to avoid the word “diabetic” for some reason, and this article says other people also avoid it, preferring “person with diabetes”. To me, diabetic sounds robotic or someone who is ill. And a final example I agreed with was “checking” blood sugars, not “testing”. The main message from the article is that by simply changing the words we use, we can help people with diabetes feel less stigmatised and live a better life.

Obviously, less stigma is a good thing but I think we also have to be careful with making diabetes sound less serious. Don’t forget that one wrong dose could lead to death. I’m worried if careful thought is not put into how we wish to portray diabetes, people might begin to normalised it and think it’s easy. And then when people struggle, they feel even more isolated because they think they are the only ones who are having a hard time. It’s OK for us when we read blogs and share experiences but for those who are less active in the diabetes world and possibly in denial of their diabetes, we must tread carefully.

I’d be very interested to hear how people respond in everyday life to the question of “how is your diabetes?” so feel free to comment, share, or tweet! #howisyourdiabetes?