Diabetes Blog Week 2016: Language and Diabetes

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I'm willing to bet we've all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don't care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let's explore the power of words, but please remember to keep things respectful.

This is an interesting one for me, because I feel different ways about different words, so I'm going to take them into three batches:

The Good: Diabetic vs person with diabetes

This is something that I really don't care about, personally. I've been diabetic/had diabetes since I was four, I've grown up with it and it's part of me. I will refer to myself as a diabetic and I don't really feel anything negative or pejorative related to that. I don't feel that I'm being defined by it, it's just a descriptive term, in the same way that I'm short, Glaswegian, geeky or a scientist. To me, it's just another one of the many things I am.  I also lazy, and diabetic is just faster. ;)  However, I understand that not everyone feels this way, and it's something that people can feel quite strongly about, so I try to use PWD or person with diabetes whenever I'm referring to someone else and try my best o be respectful of others feeling on the matter.

The Bad: Checking vs testing

This is something that I feel relatively strongly about with regards to how *I* use the words, mainly because I think it does change how I see and react to blood glucose levels.  In the same way, I also try very hard to look at the numbers as data, and remove the words "good" or "bad" in relation to what I see on my meter - it's information that's helping me decide what to do next.  I spent a long time as a child and teenager getting beaten up emotionally by "bad" numbers on a machine, and I've said before how I think it led to a form of burnout or apathy towards my diabetes care, and I'm trying very hard to change that. Notice I said try ;) I'm better at it that I used to be, but it's still a hard mindset to get out of.


And the Ugly: Compliance

Now this, this is a word I feel strongly about, and I know I'm not the only one. I hate this word, I think it's a bullshit word used by lazy HCPs to dismiss patients who are either not meeting the targets set or not doing things the way the HCP thinks they should.  I think it's very easy to just label a patient as "non-compliant" without really going any further or asking the questions that should be asked - mainly why is the patient not meeting targets? Is there something else going on? Are the targets something set by the HCP in discussion with the patient?  (and if not, why not?) Does the patient need extra help or education? And a million other things that should be asked.  I went to so  many clinics as a teenager to be told "your HbA1c is too high, get it lower!) and made to feel like a failure, without anyone ever, ever suggesting anything to help.  Additionally, just because a patient is doing things differently doesn't mean it's wrong - maybe you could learn something from them! I've learned a lot from the DOC in terms of different ways of dealing with situations like exercise, spikes after meals etc, and I'm not afraid to try new things - if they fail, fair enough, tweak and try again, ore try something else - but I've heard of people who get labelled as "non-compliant"  because they don't just follow the textbook that their doctor is using.   It's a horrible, judgemental word, and I hope it gets drummed out of use.

Hypo Awareness Week Part 2...

2. Other people's reactions to hypos

Over at Shoot up or put up, Alison blogged about hypo awareness week and asked "What would you make people more or less aware of about hypos?" This is the post that actually got me thinking about Hypo Awareness week, and public understanding of hypos in general.

If there's one thing in particular that I would change about friends and family's knowledge about hypos it's this:

Please don't panic if I say I'm low

Yes, hypos suck, and they feel like crap, but (usually) they're not the end of the world. The majority of the time, I feel low, I test, I treat and I move on. That's it. 

I once had a conversation with a colleague who had just returned from a first aid course, where, of course, they had covered what to do with a diabetic who is hypo (their answer was give them chocolate but that's a rant for another day). She'd come over to talk to me about it afterwards, and in the course of the conversation commented "you must be a really well controlled diabetic, because I've never seen you go hypo!"

After I stopped laughing at the idea that well controlled diabetes merely involves not ending up passed out on the floor at regular intervals, I pointed out that we had had entire conversations while I was low and she had no idea. Public perception of a hypo seems to be at the extreme end of things, and to be fair, the bad ones are probably the ones you hear about most often.  However, most hypos aren't like that. I usually don't tell people that I'm low, because the few times I have, they've generally panicked, and I don't want to deal with that at the best of times, even less so when I'm hypo. It would nice to just say "I'm a bit low at the moment, can you give me ten minutes to get my brain back into gear" and not have it be a huge Thing. 

While I'm writing this, I'm realising that I'm probably part of the problem! By not telling people when I'm low, they're not getting a change to see what a minor hypo actually looks like, so that they know when to help and when not to. Maybe one of the best things to come out of Hypo Awareness Week is just to get people talking about these things, and chatting to diabetics about what they actually want and need with regards to help when low.

Diabetes Blog Week 2012: What they should know

Friday 05/18 Today let’s borrow a topic from a #dsma chat held last September.  The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”.  Let’s do a little advocating and post what we wish people knew about diabetes.  Have more than one thing you wish people knew?  Go ahead and tell us everything.

If I was to list everything that I wish other people knew about diabetes, I'd be here all night (and possibly the rest of the weekend too...)  So I'm going to focus on one thing.  One thing that I want people who don't have diabetes to understand about living with diabetes.

It's not easy.

That's it.  One thing.  Living with diabetes and trying to manage it on a daily basis is not easy.  It's such a simple thing, but one that I think a lot of people just don't get.  I think we are very good in the DOC (and by extension diabetics everywhere) at making it look easy.  We just get on with it, because what else are we going to do? Additionally, a lot of the things that we do are invisible - people notice the finger pricking and the injections if they pay attention, and maybe treating a hypo, but the calculations that go through your head when you sit down to eat, or when you try to decide what to do about a walk into town, or how much you need to eat to treat that low, if your set needs changing, or if you need to order supplies, or why the hell are you high/low and a million other little things that we do on a daily basis just to try to keep ourselves ticking over?

Those things aren't really noticeable. I will never forget one of my co-workers saying to me one day that being diabetic was easy, because it just involved testing your blood sugar and taking a couple of injections every day.  That was seriously all that he thought it was about.  (I may have ranted at him for about ten minutes about how wrong he was.  He doesn't believe that anymore... ;) )  But it stuck with me how unaware people are of what we do as diabetics, and thinking about it, if you're not diabetic or looking after someone who is, then you don't really have any reason to know. 

I'm not complaining, because I don't really want pity or sympathy - this is part of my life and complaining about it isn't really going to help (though I reserve my right to rant at the diabetes fairy from time to time!), but I really wish sometimes that people would realise that just because I'm not complaining, and I seem to be doing ok with managing my diabetes and you don't see me doing something as obvious as falling over, it doesn't for one moment mean that it's easy.

Diabetes Blog Week 2011 : Admiring our differences

I've decided to take part in Diabetes blog week this year, since I think it's a really cool idea, and I think it'll be a great way to get see lots of different perspectives on the subjects, and get introduced to some new diabetes blogs at the same time! :)

Admiring our differences - Monday 5/9: We are all diabetes bloggers, but we come from many different perspectives. Last year, Diabetes Blog Week opened my eyes to all of the different kinds of blogs (and bloggers) out there – Type 1s, Type 2s, LADAs, parents of kids with diabetes, spouses of adults with diabetes and so on. Today let’s talk about how great it is to learn from the perspectives of those unlike us! Have you learned new things from your T2 friends? Are D-Parents your heroes? Do LADA blogs give you insight to another diagnosis story? Do T1s who’ve lived well with diabetes since childhood give you hope? Pick a type of blogger who is different from you and tell us why they inspire you - why you admire them - why it’s great that we are all the same but different!!

I have to say, since joining the DOC and reading many other diabetic blogs, I have learned so much about the different types of diabetes and the people who live with it. I've learned more about type 2, which I knew a bit about, I've learned about the various type 1.5's, which I knew very little about, I 've read about what it's like to be on the other side of this diabetes shindig and deal with someone you love living with it.

But the thing that's got to me the most has been reading the stories of the parents of diabetic children.

See, I was four when I was diagnosed with diabetes. I don't remember *not* being diabetic. I've grown up with this condition. I have no memory of diagnosis, or the weeks in hospital, or those first few months while my parents had to deal with their world being turned upside down. My mum says that when I was diagnosed she was quite calm at first. It was a relief to get a diagnosis after she's been passed over by one doctor as being a paranoid mother. I'd been diagnosed with juvenile rheumatoid arthritis a couple of years before, and that had taken months and months to diagnose. In comparison, the diabetes diagnosis was relatively straightforward. The treatment, however, not so much. She says I used to run and hide and fight them when they had to do my injections, until I realised that they were making me feel better and I stopped fighting them, and even then there was all the other bits and pieces to learn, and this was 23 years ago when treatment solutions weren't quite as advanced as they are now.

I always used to think "well, at least I was four, at least I wasn't a baby." And then my little cousin turned four, and all I could think about was how tiny she was. I can't imagine what it's like to have to inject your child just to keep them alive. To test their little fingers, to watch every morsel of food that goes in their mouths, to try and figure out if they're hypo, or hyper, and deal with that. Not to mention sick days, holidays, school and a hundred other things these wonderful people deal with every day, taking responsibility for treating a disease that does not in any way play fair.

To the parents of diabetic kids in this community, I salute you. You are all amazing, wonderful people who have shown me what it's like to be on the other side of diabetes. You have made me appreciate what my parents did for me as a small child when I was too young to even be aware of the sacrifices they made to keep me healthy. I know what it's like to just get on with it, because diabetes is not going anywhere. It's not always an easy task, but at least I'm doing it with all the information relative to me at hand. To do it on behalf of a child, who may not always be able to explain how they're feeling, or what's wrong, or even simple things like how much exercise they may have gotten while out playing with friends? That's incredible, and you have my complete admiration for it.

Control

I've been thinking about control recently, or rather, other people's perceptions of control. Leaving aside the difference between controlling diabetes and managing it, because I think we do the latter and not the former (but that's a post for another day), I've been surprised on a couple of occasions recently by how non-diabetics understand it.

A girl in my lab recently went on a first aid course, and one of the things they learned was how to treat a diabetic having a hypo. When she came back we were chatting about it, and she said to me, "you must have really good control, because I've never seen you have low blood sugar or anything!" I had to laugh at this because I've had entire conversations with this girl while hypo, and she didn't have a clue. Further probing revealed that she thought a diabetic taking a hypo would be very, very obvious, and most likely involve passing out. It reminded me of Kerri from SixUntilMe's excellent vlog post while hypo, where she points out that even when quite sick, a diabetic can come across as being completely ok.

Another thing that occurred was a discussion with occupational health. I'm currently transitioning from being a PhD student to a post doc in my lab, and now that I'm a postdoc and actually employed, I have to go through all the things that new employees do, including checking in with occ. health. I've been through this before, so I knew what to expect. One of the questions I was asked was if I'd been hospitalised in the last year due to my diabetes, to which I replied "No, not in the last year." She then asked when I was last hospitalised, and I told her it was about 15 years ago (thanks to a nasty case of DKA, but again, a post for another day). She replied, "oh, so you're well controlled then!"

Both conversations made me boggle a little, if I'm honest. I work in a biochemistry lab, these are intelligent people who all have science degrees, so I always figured they would understand at least some of the science behind diabetes. But their idea of good control is not passing out or being hospitalised??

There is hope though. One of the guys made a comment about how diabetes was just about testing your BG and having a couple of injections a day. After I exploded explained to him that that was very much not the case, he became quite interested in it and we had a really good discussion. He did ask at the end "so what do you do if you're diabetic and you're not good at maths?" ;)