Ninjabetic – The C word (in diabetes)

It is complicated this diabetes business, isn’t it? The diagnosis of a long-term condition can be life altering. The management differs between us all, and sometimes it changes so frequently that it feels impossible to keep up. Personally I feel that I’m constantly striving and fighting for something that will never be absolutely perfect because… well that’s just how diabetes goes. It plays ball and everything is great but very quickly it can turn, that’s just something we have to get used to.

This feels like a good time to talk about the C word. No, not that C word… I can’t swear online in case my mum’s reading! I’m talking about complications.

My first experience of discussing diabetes complications was, shall we say, less than adequate. I was 16 years old and had been newly diagnosed with Type 1 diabetes. I don’t remember many conversations I had around diabetes but what I do remember is the feeling of fear, closely followed by withdrawal, after THAT conversation. I was told of the complications that I could experience almost as soon as I walked into the room and not much else. I wasn’t told about how I could avoid them, or what could cause them. I wasn’t told that my glucose levels were, at the time, relatively well controlled, and that I was on the right track to sidestepping complications. What I did hear were frightening and, what seemed to be, threatening words, and upon hearing this information the scared teen in me wanted to do nothing more than run. I still remember to this day all of the small details – the room I was in, where I sat, what I was wearing, what I was told… I remember the healthcare professional (HCP) and I vowed to myself that I wouldn’t go back. I didn’t go back, not for nine years.

Fast forward 13 years and things are much better for me now (despite the fact that I do have complications), however, I do wonder how things could have been if that initial conversation went differently. What if I had been told that I could live a long, happy and healthy life with diabetes? What if I had been provided with positive reinforcement that my glucose levels were on the right track and that I was doing well? What if I had been told successful and motivating stories of people with diabetes who climbed mountains, ran marathons and achieved everything they wanted in life. I know now that all of this and much more is very possible! What if always plays on my mind…

One thing I’ve learnt from being a patient (and now being a student nurse) is that flexibility is key and there is no ‘one size fits all’ approach

As I think about my complications today I also think about what it’s like for the other side, for the people delivering the information to their patients. I think about the HCP who perhaps wasn’t used to talking to a shy and (admittedly) quite awkward 16 year old girl. The HCP who perhaps didn’t have the knowledge or understanding to guide me on my way and explain that complications weren’t my fate. The HCP who perhaps had been completely unaware that the approach used was not appropriate. The HCP who perhaps in the past had achieved success with patients by using the approach that was used on me? At the time I only blamed one person for my attitude and actions when it came to my diabetes, but looking back do I think that their intention was to scare me and drive me away? Absolutely not. Not at all… Nu-uh! I feel that they wanted me to take good care of myself and to be made aware of the possible complications, but sadly the way they delivered their information was all wrong for me.

This leads me to flexibility in communication. One thing I’ve learnt from being a patient (and now being a student nurse) is that flexibility is key and there is no ‘one size fits all’ approach, especially when it comes to offering information about diabetes complications. I know of patients who find the more forceful and direct approach to be a great benefit to them. Some find it really motivating and effective in their diabetes management to know the ins and out of complications from the word go. On the other hand I know plenty of patients who prefer a soft and gentle approach, with considerate conversations held at the right time around the awareness of complications, followed up with heaps of encouragement and support. This is how I like it – soft, gentle and tailored to me… maybe even whack in a bit of humour! So how can HCPs discover which approach is appropriate before the C word is used? By getting to know patients as a person and not just a HbA1c – it’s so important to know a patient before dropping the C word.

I’ve also discovered in the past three years that peer support has a huge role to play in the awareness and prevention of diabetes-related complications. As many of you will know I’m very passionate about patients supporting each other and I am yet come across anyone who can approach the C word as well as another patient can. The understanding of how it feels to be in someone else’s shoes can’t be beaten in my opinion, and I really feel that patients are under used in this area. With a little training why can’t people with diabetes work alongside HCPs to deliver this information? We see successful programmes training lay educators in Type 2 diabetes, could this not work for Type 1 as well? It’s already happening online… patients are taking control and increasingly approaching each other for information and advice rather than their health care professionals. This isn’t a fad either – peer-to-peer education and support will continue to happen and continue to grow.

I like to dream big, I know I do, and often my ideas are too big to achieve, but diabetes patients have something that many HCPs don’t, experience of living with diabetes. What don’t all patients have? Apart from not being HCPs, we also (sadly) don’t have to power alone to make big ideas such as this happen (yet). We still rely quite heavily on the powers that be to give us the thumbs up. What could potentially make huge waves in the world of diabetes care when it comes to education? A combination of experience and being able to relate to a patient as well as clinical/evidence based knowledge. Doesn’t it seem obvious that we should all join forces more often? We all do have one goal in mind after all…