By far the biggest challenge of my 12 years with type 1 diabetes so far has been dealing with its impact on my emotions and general mental health. While I get on with the rest of my life, working in a demanding job and raising kids with my husband, my inner thoughts about my diabetes are like a soundtrack playing on a loop in the background. What’s my blood sugar? Am I in target yet? When did I last eat? Have I got to walk anywhere? Why am I going low? Do I need to order more supplies? Variations on the same questions many times a day, every day.
Apart from the background day to day noise of diabetes, there have been times in my life with diabetes when the emotional pressure has ramped up and been more difficult to deal with, and yet I have hardly ever been invited to open up about them, discuss them or seek support on any of these challenges by my medical teams. On their own, they never felt like they were worth bringing up in my appointments, but looking back I think if I’d been asked the right questions I would have been really keen to talk about how I was feeling (not just my test results).
How having Type 1 has affected my emotional health
1. The shock of being diagnosed out of the blue at age 26
2. Overcoming the embarrassment of injecting in public
3. Coming to terms with body image issues (lumpy injection sites)
4. Refusing, then tearfully accepting that I needed to move to an insulin pump (cue more body image issues and ramping up the visibility of my condition)
5. The stress and worry of two pregnancies with type 1 diabetes (will the baby be OK?)
6. The guilt when my type 1 diabetes (probably) affected my newborn
7. Diabetes burnout made me unable to bring myself to test my blood sugar enough, but I still worried about it all the time
8. Moving countries and the anxiety of changing doctors / treatment / healthcare regimes
9. Unsympathetic “tellings off” from doctors about the things I wasn’t doing right (without trying to find out why)
10. Thanks to the amazing technology of my flash sensor, I no longer have to deal with number 7 on this list, but ready access to my blood sugar readings throughout the day gives a lot of data and very often for me that is out of range (cue feelings of failure and demoralisation, multiple times a day every day)
Emotional support is vital
I’m lucky that I have a really supportive husband who I can talk to this stuff about, but I haven’t always been open with him about all my worries and challenges. Diabetes is boring so not the thing you want to open with around the dinner table, and I also held back from talking about it with my friends and family because I didn’t want to worry or burden them with “my” problem. I ended up bottling it up so much that I couldn’t keep it in any longer, and I definitely suffered as a result.
I’m so pleased to see the #ItsMissing initiative launched this week by Diabetes UK which recognises that living with diabetes is relentless and challenging, and that mental health support for people living with diabetes is lacking. I hope this support will be available to everyone with diabetes, and for conversations to be started at every appointment so it becomes a normal part of diabetes care.