Diabetes is sometimes referred to as an ‘invisible illness’. In fact, yesterday marked the end of ‘Invisible Illness Week’ in the US. Here in Australia, the Chronic Illness Alliance has their Invisible Illness resource. This data base provides information about a variety of conditions (including type 1 diabetes). It has been designed for schools and offers insight into how the different conditions can impact children and young adults.

The invisible part refers to the fact that diabetes can be hidden. But just how invisible is my diabetes? If you saw me walking down the street, you wouldn’t know I had a medical condition. I don’t look sick. Most of the time, I look fairly OK – ignoring the times I’ve had a top inside out/dress tucked into tights/two different shoes etc. None of these things is related to anything other than my general klutziness.

Of course, there are times when it doesn’t feel invisible at all. In fact it feels like it’s right there, front and centre, waving maniacally at anyone and everyone nearby. But that’s not the reality. I certainly don’t have a big flashing neon sign above my head announcing to all and sundry that I have diabetes.

The other question is why is it invisible? And who makes it that way? Well, I don’t talk about it much. Of course people at work know I have diabetes (apart from the fact that I work at a diabetes organisation, I am often dragged out as the ‘here’s one we prepared earlier’ consumer rep), but it’s not discussed all the time. I don’t mention it much to my friends without diabetes and when I get together with my friends with diabetes we quickly sum up our ‘diabetes states of mind’ and then move on to much more important things.

The ’30 Things about my Chronic Illness Meme’ asks people to consider questions about life with an invisible illness and then blog them. I’m coming in late, but one of the reasons for that is that it took me a while to respond to some of the questions – especially the ones that focus on what I’d do if I didn’t have diabetes. Anyway, here are mine. And if you have time, you might want to fill them in too.

    30 Things About My Invisible Illness You May Not Know

1.The illness I live with is: Type 1 Diabetes
2.I was diagnosed with it in the year: 1998 (on 15 April for those playing at home)
3.But I had symptoms since: for only about 10 days prior
4.The biggest adjustment I’ve had to make is: thinking like a pancreas.
5.Most people assume: It’s a ‘set and forget’ condition: take your insulin and all will be good. If only! And so many more assumptions, which is why we developed the ‘Type 1 Essentials’ Card. Myth busting in your pocket!
6.The hardest part about mornings are: mornings full stop. (Always have been – that has nothing to do with diabetes, I just like a sleep in!)
7.My favorite medical TV show is: Right now, Monroe. James Nesbitt rocks!
8.A gadget I couldn’t live without is: Literally – my insulin pump and BGL meter. Figuratively, my iPad.
9.The hardest part about nights are: The middle of the night hypos. (And their corresponding two-hour-later highs.)
10.Each day I take 0 pills & vitamins. (No comments, please) But insulin is dripping into me constantly (and flowing in when I eat brownies!)
11.Regarding alternative treatments I: think – do whatever works for you!
12.If I had to choose between an invisible illness or visible I would choose: Probably invisible. I like that I can hide it from strangers (and non-strangers) when I want.
13.Regarding working and career: When I was diagnosed I was a musician and a teacher…. And trying to work out what I really wanted to do. Now I work for a diabetes NGO and I am passionate, committed and dedicated to the work we do.
14.People would be surprised to know: that as I type, my BGL is 2.7mmol/l.
15.The hardest thing to accept about my new reality has been: that I may have passed on some of my faulty genetic matter to my daughter. And I don’t know how I’ll be able to ever forgive myself if that has happened.
16.Something I never thought I could do with my illness that I did was: have a baby. A healthy, beautiful, gorgeous, wonderful baby who has grown into a delightful, intelligent, fabulous, stunning, caring nearly-seven-year old little girl.
17.The commercials about my illness: are amazing! Who knew that EVERY BGL could really be 4.8mmol/l? Or that stomachs don’t have tiny marks from previous pump sites (I’m looking at you Medtronic ads!)
18.Something I really miss doing since I was diagnosed is: running out the door without a huge handbag! The days of a tiny clutch containing lipstick, keys, and mobile phone are gone forever!
19.It was really hard to have to give up: dreams of wanting to be a commercial pilot. Not really, but I can’t think of anything I’ve had to give up.
20.A new hobby I have taken up since my diagnosis is: hunting for the perfect handbag and cute little purse to hold my BGL meter.
21.If I could have one day of feeling normal again I would: breathe. And just be.
22.My illness has taught me: about persistence and what it is like to really work at something because I wanted it so much. That something arrived in the shape of a perfectly formed baby girl in November 2004.
23.Want to know a secret? One thing people say that gets under my skin is: ‘should you be eating that?’
24.But I love it when people: pass me the biggest piece of cake first! (Greedy much?)
25.My favorite motto, scripture, quote that gets me through tough times is: ‘diabetes is not an illness, it’s an inconvenience.’ Spoken by a 70 year Kellion Medalist a few years ago. Legend!
26.When someone is diagnosed I’d like to tell them: This isn’t the end. It’s just the beginning and the stuff ahead is awesome! And you are not alone!
27.Something that has surprised me about living with an illness is: Diabetes means different things to every person living with the condition. Whenever I’ve made assumptions, I’ve been wrong!
28.The nicest thing someone did for me when I wasn’t feeling well was: not say ‘I know how you are feeling’ and then make it all about them.
29.I’m involved with Invisible Illness Week because: raising awareness is what I do. And I want other people to think about these questions too.
30.The fact that you read this list makes me feel: kinda special, really! And like you want to know more about what my invisible illness is like. And like I want to know about yours too!

*I am a Harry Potter tragic. And (tragically!) I try to find a Harry Potter link in lots of things. Invisible condition to invisibility cloak may be a stretch, but hey, it was the best I could do given current circumstances (see point 14 above)

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