I’ve been living with type 1 diabetes for over 25 years, which is many more years living with it than without it. My diagnosis story isn’t as traumatic as some others in the community, my levels were from what I’ve been told around 29-30mmol/L (yes I’m from the UK and we use mmol/L so that’s roughly 522 mg/dL), I never lost consciousness and was never in a coma. I am very fortunate. Like most people living with diabetes, my biggest challenges were yet to come.
I was diagnosed at 10 years old (you can work out how old I am right?) and my biggest challenge were my teenage years and early 20’s. It was a struggle, a really hard struggle. Looking back during that period I was experiencing what I now know as diabetes distress and diabetes burnout. (You can learn more about these conditions here). In that period, I was hearing from various healthcare professionals scare tactics as to why I needed to look after myself and what would happen to me if I don’t. Whilst these words were supposed to motivate me, they didn’t. Far from it. I was a teenager who thought I was invincible and these potential consequences were so far away and of course they would happen to someone else just not me. I lived my ‘best life’ or at least what I thought it was. That’s the thing with diabetes is that it can, if you allow it to, lull you into a false sense of security.
Diabetes and its associated complications almost come hand in hand. Living with diabetes you are always aware of the impact this condition brings in the short, medium and long term. Hypos, hypers, DKA, eye, kidney and foot problems, eating disorders, disordered eating, diabetes distress and diabetes burnout, nerve damage and sexual problems are all complications of diabetes. The conversation around the first three is quite comfortable but the others not so much. This needs to change.
You may be thinking what makes me qualified to say that the conversation needs to change? What does he know about life with complications? I’m currently living with diabetic retinopathy (I can’t remember when this was first diagnosed) I’ve had multiple laser surgeries in both eyes and I’ve had vitrectomy surgery in my right eye. In 2013 I was diagnosed with Chronic Kidney Disease and in 2018 I was very fortunate to receive a kidney transplant. I have some lived experience of living with complications. Ok so I live with complications so why do we need to talk about them?
This is where it gets interesting. You may be reading this and be living with complications or you may not. That’s fine. My experience of being diagnosed with complications meant that I felt like I had failed some sort of diabetes test. I felt alone and also like a failure. All of those warnings I received years ago, the scare tactics were all coming true. I initially thought to myself if only I had listened at the time. These same thoughts came about when I was diagnosed with Chronic Kidney Disease. That feeling of being alone hit like no other if I’m honest. Imagine feeling out millions of people worldwide living with diabetes, you are the only one who has complications. It makes no sense but at the time it did. I’ve spoken to others and they’ve said something similar. This is why we need to speak about complications because there are others out there like me and possibly like you.
We are always told it is good to talk and it is, it really is. So why not talk about a subject that many of us living with diabetes, regardless of the type, face on a daily basis? There’s a deep-rooted stigma attached to someone have complications. They didn’t look after themselves, they don’t care about their life and so on. This can be found in the diabetes community.
I believe that even though many aspects of the community is great, we as a community, where all members face these challenges should be proactive in having these conversations in a safe environment because none of us are excluded from developing complications. Diabetes is relentless and doesn’t discriminate. To create this safe space means us as a community taking back the power from negative narratives and stigmas and having open and honest conversations. I’m in no way saying that anyone living with diabetes shouldn’t be doing their best every single day although some days our best is better than others. I’m saying that normalizing the conversation means that if you are either living with or diagnosed with complications that you don’t feel alone or feel like you failed a test. You instead know that others have faced what you have.
The results? A community that openly embraces all aspects of life with this relentless condition that none of us asked for and an understanding that you are never alone on this journey with diabetes.