I don’t like a fuss about anything much. I dislike being the centre of attention at birthdays and parties; its not that I don’t like them, more I like to be part of a bigger thing not at the centre of something. But when it comes to my Diabetes I had an insight this week that my inherited stoic approach to my personal health might not be for the best.
There is no doubt in my mind Diabetes is tricky every single day. I can’t do many things without thinking first: a latte with a friend (how much milk and how much carbohydrate), a long walk (where are those pesky glucose tablets and where shall I carry them) a night away (do I really need to take all this stuff?), and that’s just the tip of the iceberg.
Through personal preference I don’t talk about this all very much. I have to do it, not you, and why would you want the boring details?
But of course this behaviour masks what is going on and renders my Diabetes, a big part of my way of life, invisible.
Does that matter? Sometimes it does, sometimes, knowing these things about me is helpful, it might explain my tubing poking out of the top of my tee-shirt or my seemingly sudden lack of focus, or my trying to cram biscuits in to my mouth. Not very glamorous is it really?
So what is it that I feel inhibits me? Is it about me or is it about the environment in which we live? Sadly, its about both. I am not predisposed to share and people are interested in differences but not always for the right reasons. Responses like: ‘Should you be swimming?’, ‘Shouldn’t you be at the Medical Aquafit not the normal one?’, ‘Should you be eating that?’ and ‘Did you really have a baby?’ are irritating narratives in my life.
My contact with more people with Type 1 via social media has encouraged me to be more open but I still do so with a feeling of unease.
So why do I think it matters? I think it matters because it is really hard. Much as I want to be seen as a strong woman who copes with really well with her life, sometimes, sometimes, it stinks. And if I don’t tell you, how will you know? Because when life stinks its always helpful to have the kindness of people. So if you know someone like me, empathy but not sympathy is the best answer. I don’t want sympathy but I would like people to know how hard it is! This week has been a hard week. High readings that make you feel frankly shocking for no perceivable reason other than that it’s Diabetes.
So don’t judge me if you see me in the supermarket cramming food that hasn’t been paid for yet into my mouth. The choices are stark…. eat or pass out on the floor!
People with Diabetes are not alone in having an invisible disability. Watch this great video by Pam Relph for some insight into invisible disability and if you are on Twitter have a look at #morethanmeetstheeye. Its an old hashtag but worth a look through.
PS Why do I still feel whingy writing this post? I hate feeling whingy!
I’m tired of ignorant so called medical journalists victimising diabetics as though it’s their faults they have ” contracted” diabetes. The public still remain clueless alas. All the best to you and your invisible “ailment” I would almost certainly find it irksome!
I EMPATHISE with you Annie… I work as a practice nurse ,leading a nurse led diabetes clinic and I hear what you have just said occasionally but hear it in the music behind the words most days in the clinic…. I am a now a DM2 and am learning all the time from my patients but my understanding and insight has deepened since my diagnosis . I never understood the daily ‘grind’ of having diabetes and for a DM1 it is a moment by moment grind . empathy & admiration from me to you lovely lady – Sue Mc
Keep on keeping on and posting. P x