This blog was first posted on the Diabetes UK blog site
When discussing diabetes, it can be quite easy to revert to familiar topics depending on who you speak to. Talking to other people with diabetes can lead to trading war stories about particularly unpleasant hypos or serious hospital stays as well as what type of therapy they use to manage their condition. Talking to people who don't have first hand experience of diabetes can turn into a discussion about being type-aware or explaining (for what may feel like the millionth time) that yes, you can have a biscuit/chocolate/piece of cake without needing serious medical attention.
What doesn't get possibly as much discussion are the mental aspects of having diabetes. I'm by no means an expert but I think it's important to make time to give these 'hidden' aspects as much consideration as other factors.
I think it can be quite easy to bypass how you feel about having diabetes because living with it becomes such a normal part of your day, you don't necessarily stop to think about it.
What prompted me to consider this quite recently was the set of forms I received as part of my REPOSE 6 month follow up. The premise is quite simple - you're faced with a number of statements and asked to score them on a scale of 1-5 based on your experiences over the last 4 weeks (e.g. very likely to very unlikely, extremely important to totally unimportant etc.)
That sort of process in itself isn't anything new, but what it does offer is a chance to reflect on those moments when you might have felt sad, angry or frustrated and not consciously understood the reason why.
Some of the questions are quite generic and deal with how you rate your quality of life overall, how you feel on a daily basis and so on. Others ask you to consider how living with the specifics of diabetes affects your relationships with the people around you and your day to day activities or future ambitions.
Whilst I wouldn't dream to speak definitively for anyone else, I'm sure that at some point, many people with diabetes have experienced some sense of anger or frustration that relates to their condition and I know I certainly have. What I don't tend to do is reflect on those feelings and either rationalise them or find someone who can help me with them.
If I were to ask you how much you feel burdened about having to think about your nutrition or how frustrating you find the fact that others don't understand your treatment, you might not give them too much thought. Hopefully for the vast majority of people, such things really aren't factors in your day to day life. However, for some people, struggling through on new regime of insulin therapy or coming to terms with a recent diagnosis can leave them feeling stranded and alone.
Whether you've been diabetic for 12 weeks for 12 years, you're bound to go through difficult times at some stage and but it's being able to manage them that is important.
My lowest point came after about seven years after my diagnosis (I'll have been a fully paid up member of the T1 club for 12 years in October). I got to a point where testing my BG and seeing constantly high numbers would make me feel depressed so I stopped testing regularly. I don't mean that I'd test once a day, I'd be lucky if I tested once a week. As a result my HbA1c rose steadily and I was going to 6 monthly hospital reviews armed with more and more constructive excuses and promises that things would be different next time. I'd be economical with the truth with my family because I felt ashamed I wasn't looking after myself when really I didn't want to admit that I either felt too exhausted to do it, or I couldn't remember how. This continued for about 18 months before I eventually came clean and with the help of my wonderful wife, I started to get things back on track.
I'm incredibly lucky that I have a very supportive family and a great relationship with my specialist team that helps me through the tougher times. There's also a lot of other support out there in various other guises. The Diabetes UK Peer Support Scheme is designed to put you in touch with someone to talk to about living with diabetes, whether you live with it yourself, or look after someone who does. There's also a growing online community of people with diabetes who can listen and help you.
Filling in my 6 monthly review forms has been a cathartic experience and a reminder that whilst things might feel good today, I've also experienced some serious low points and managed to come through them relatively unscathed. If I'd had to fill in the same forms a few weeks after getting my insulin pump, I know for a fact that the answers to some questions would have been markedly different but being able to reach out for support to the right people at the right time has made me stronger.