Language matters has been a topic on everyones lips for a while now. Is it important? I think so and here’s why.
My Name is Gemma. I suffer with Anxiety, Depression and of course Type 1 Diabetes.
When my anxiety is bad I suffer with my sugar levels and scanning (Libre) becomes too much – I find I worry about every scan and number, if I have taken enough insulin to cover my food and will it cause me to go hypo. What if I scan and I am high, will my DSN then think I have deliberately not taken insulin right or will they think I am just not trying hard enough? You can see the pattern where my mind goes when anxious. I won’t bore you with the full details but that is a small taster into my mind set at times.
Recently, I began noticing a trend that I have between myself and my DSN and how much my anxiety gets triggered by it. Now, before I get into this further, I truly do appreciate the time they spend with us and how time centered their job is and how busy they can be BUT please do hear me out.
The last year was the most stressful of my life. I won’t go into details but let’s just say that my sugar levels took a beating for it. I self-funded my Libre when it first came out, many years ago to gain control of my diabetes. I then fought hard like everyone else to get it funded by the NHS. It has been a game changer for me and my control and I feel less anxious for checking my levels now. But the downside is my DSN can see my data at any point. Which is where I feel they can treat us like a number or a target. Whenever I explain if my levels are high there isn’t much understanding and more of a telling off attitude. Now I am all for telling offs if they are due but I never respond well to someone being preachy at me. Positive reinforcement works wonders. Just a little well done I can see your levels have improved but that one day, phew! was work stressful. Did something happen? Take the time to speak to the patient, make them feel they aren’t just part of some target you need to complete so you look good to your seniors.
At one appointment, a few years ago I had spent ages typing up bullet points that I wanted to discuss so she (my DSN) could read quickly and then we could discuss as my memory is bad at times. She just handed it back and said you might as well just tell me – in which the whole app’ was just me telling her how I felt about my anxiety and how my levels had changed and what improvements I had done to sort them out. All I got at the end was quite a strip down and to “get things back on track ASAP” and I “have to get my Hb1ac down.”
The theme with my apps is this bloody HB1ac. Yes, I know I need to get it down – stop banging on about it. I try and keep my levels between 7-10 because when at 5 I drop quite quickly. Nope that wasn’t allowed – between 5-7 is the prime levels. Well here we are again with language matters. Why can’t they see that it works better for me at 7-10 and my Libre data backed me up, I also tried their 5-7 option and I had 3 hypos a day for 4 days straight. I soon stopped that with changes and now I range between 7-9.
It’s all down to individual targets – you cannot give us the same “talk” when you speak to us. Everyone reacts differently and we don’t all needed the “you will end up in hospital” talk.
I understand, if the numbers are through the roof, of course it is their duty to help us get them back on track. The key word in that sentence is ‘Help’ , How many times have you left an appointment and felt the why bother attitude? when they push too hard with the “you are going to lose limbs, your health is at risk”. We all know the downsides of bad care with our T1D we do not need reminding, Yes, that may work others but not all.
I find it frustrating when I have spent weeks getting my levels under 10 ( they were in 20’s before) and I was feeling pretty good with myself until the phone call came from my DSN. Not once did I get a “well done you’re doing well keep going” or “I have looked at your results what have you done to improve them?” and then go onto the on-going tasks to get them lower. Instead she asked me how I should improve them further. What can I do to make it better? It was all down to me to get them on track and I have the knowledge to do it so it’s down to me now and there is little they can do. Not once during that phone call did,I receive any encouragement of what I had changed was working or a well done for them being more in range. That’s the latest one target in range- I felt like a shooting range target result when they talk about time in range. I imagine a shooting board coming racing up from the back and saying “Gemma, You were 40% In range but the rest off target”. I just feel it can be a numbers game rather than talking to a person and understanding their needs.
Now, you may think why seek validation from others when it is my personal journey? but after all the months before I had been in the 20s for weeks on end and I had really curved my levels. I was just wanting some form of recognition of the work I had done, I had changed my own ratios, I had spotted where I was going wrong and I had made the changes myself.
Language does matter to those who have a health condition. We work so hard every day to keep ourselves alive, yet sometimes it can feel as if we are just a number to our HCPs.
We are human beings. We do suffer. You give some one with anxiety a hard push and use hard language like “you could end up in hospital” etc, you could push them to the point of being so anxious they won’t check their levels because you feel every time you look at them you fear the answer. Or every time you scan and it’s higher than you want. You worry that the nurse will see it via the Libre data sharing and then make an opinion based on that number and not the reason why that person was higher at that point.
Language matters because it can be hurtful. It can be hard to hear and with all that goes on in our lives sometimes we need a little bit of support and encouragement and not just sent on our way with harsh words.
We are not a number or a target to complete, we are humans who live with this condition day in and day out.