The Language of Diabetes

I’ve been thinking recently about the way that I talk about diabetes and the way that others communicate with me and also about me. Language is a very powerful tool used in discussions about diabetes, and a person’s choice of words can greatly impact on a patient and the way that they manage their condition.

During a recent consultation with a diabetes Professor, he described my blood glucose levels using the words “bad behaviour”...

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From covert to overt rebel

I was once described as a covert rebel when it came to my diabetes self-management and the treatment I need from my health care team. I suppose this meant that I would hide a lot of the issues that I had with diabetes, not only from Health Care Professionals (HCPs), but also from myself. Obviously this isn’t something that got me very far… but being secretive was a reaction that evolved from many health related experiences that I didn’t understand or that I didn’t want to go through again.

So today I suppose I’m being a rebel, but an overt rebel.

You know those forms that we’re given to establish our emotional and mental state when it comes to life with diabetes… PAID questionnaires, mood questionnaires… do you have a smiley or a frowny face questionnaires etc. Well I’ve had some of these for a few weeks now, sitting in my lounge collecting dust. Having filled in the exact same forms only 2 months ago and expecting some sort of feedback afterwards, I decided to think things through in more detail than I usually would before completing them...

I suppose they occasionally make a good coaster for my tea, but obviously they have a much more important job. But what is that job? It’s never been explained to me. I know that I’ve been handing in these questionnaires for many years now. I recalled in a blog recently completing one when I was around 18 years old, and I’ve done quite a few since then for different HCPs… but what are they for? What can they do for me? If a questionnaire can evoke tears in a patient, surely they are addressing an issue that needs to be followed up?

I know what they tell me… they tell me if I’m coping or not, if I’m engaged in my health or not, if I’m worried about the future with diabetes or not and many more things. But then what do they do? Once I’ve completed them what happens next? Are they a box ticking exercise? Maybe they go towards a giant pool of data that’s been collected about patients all over the local area… maybe they just go into a filling cabinet – out of sight out of mind? I really have no idea!

What happens to patients after we’ve filled in these thought provoking forms? I can only talk from personal experience but after filling them in I’m left with an open door… one that I’ve kept closed for many years… a door that once is opened is hard to close again when I’ve been asked to address questions such as:

Do you feel scared when you think about living with diabetes?

Do you feel constantly concerned about food and eating?

Do you have feelings of guilt when you go off track with your diabetes management?

So I answer the questions that are placed in front of me, often with test results or blood glucose patterns swimming through my head, with only myself and my HCP in the room, in an environment that isn’t exactly relaxing and with no explanation of why I’m being asked to do this or what will happen next… and I face up to the fact that actually, these questions do force me to reflect on how I’m feeling, managing and coping, but I just hadn’t acknowledged it until that moment. Why hadn’t I acknowledged it? Because I can’t always do that on my own. Quite often that’s a feeling that scares me… and then I leave. I go home on my own and I reflect. It's something that I do without even realising I'm doing it, but I think about my answers... Cue the covert rebel wanting to come back into play.

Then I repeat this routine again when I’m asked to…

However this time I haven’t. I’m waiting for an answer. I’m waiting for an appointment so I can ask “why and what’s going to happen afterwards?”

I understand the importance of collecting data but I also know, as a patient, the importance of assessing, planning, using interventions, and feeding information back to patients… involving them in every aspect of their care. 

If I am going to be addressing issues that life with a long term condition can bring, as and when it is required of me, then I will only do so when there is a plan in place for the repercussions of this exercise. My HCPs may call me difficult for taking this stance, people reading this may not agree that it's the right thing to do, but in order to be engaged in my care (which is what my team wants) I want to be engaged and informed in all aspects. I think that's only fair.

Reading this blog back before hitting the publish button I feel that I already know what the answer will be when I ask my question... but I hope that I'm wrong. As for the support that I may or may not get as a result of these questionnaires... that's a whole other topic to be discussed another time.

Ninjabetic x 

Don't pity me - learn from me

Today's blog post wasn't meant to be here. It was going to be written for my nursing blog as I wanted to talk about my first patient experience. Instead I'm writing about a comment which was made in response to my diabetes.

I'm volunteering at a local centre, gaining some hands on experience with patients. Today I was chatting away with a patient who has Type 2 diabetes. I struck up conversation as soon as he mentioned his diabetes and chatted with him as we both have the same consultant. As the nurse who I was shadowing came into the cubical she caught the end of our conversation.

"Do you have diabetes Laura?"

I replied (quite proudly) that I have Type 1 diabetes and was diagnosed 10 years ago at the age of 16.

"Oh you poor thing, but you're so slim as well!" was her response.

I was stunned and quite disheartened by this. I felt my face drop and didn't really know what to say at first. Admittedly it wasn't the first time that I'd experienced a lack of knowledge or understanding about the different types of diabetes, but I've never experienced it from a health care professional before. I couldn't not say anything could I? Diabetes is important to me, it's a part of me, it's the area that I want to have a career in and I think of myself as a diabetes advocate now. If I didn't correct the comment then I'd be letting the side down. Go team!!

I explained that weight has nothing to do with me having diabetes. I reiterated that I have Type 1 diabetes and explained that it is an autoimmune disease which has nothing to do with my lifestyle, and I had no influence or control over my diagnosis. I felt that what I was saying was such an obvious statement to make that I may have sounded patronising, but I was polite and I didn't let on that I'd been offended.

However there was no getting away from the fact that a health care professional had said this. The comment hadn't been made out of malice and could have been an honest mistake, but to me this just shows what a lack of education there is out there. We need to trust people to care for us and to know how to manage our condition, but can we trust people who don't know the basics of diabetes?

Hopefully the tiny bit of knowledge that I passed on will be remembered and passed on again... hopefully.

What has also been playing on my mind was the pity; "Oh poor you." I didn't understand why someone was feeling sorry for me. I'm happy healthy and fit! I don't look ill and I'm learning to manage my condition. I personally don't see diabetes as an illness the majority of the time. Occasionally it does give me a good beating but I still live a normal life.

I know the effects of negative perceptions about diabetes. I've experienced those effects first hand and I can honestly say that supporting someone and highlighting the positive aspects has much more of an impact than pitying and focusing on the negatives. No one should be blinded by the media and the way that Type 1 diabetes is wrongly portrayed. Ask us, make the effort to see what we can do, look at us and see the real image of a person with Type 1 diabetes. People will be shocked that we aren't the stereotype that is projected to the general public, maybe that will shock them into thinking next time before speaking.

I would never pity anyone who has a chronic condition; in fact I would praise them for picking themselves up time after time and getting on with their lives! I'm a stronger person for having diabetes and if anyone feels sorry for me then they can walk on by.

Ninjabetic