When I was 8 years old, I experienced something in my primary school classroom that would have a lasting effect on me for the rest of my life.
One day, a new boy joined my school and and was given a seat right next to me. Midway through class he took out a machine the size of a large shoe box and sat it on his desk. He took out a small instrument, pricked his finger with it and placed the blood it had drawn on a long test strip. I sat there and watched, mouth wide open in shock as he wiped one end and waved it around. About 2 minutes later (this is literally how long testing your blood sugar took in 1988), he retuned the box back under his desk and turned his attention back to class. Little did I know that more was to follow at lunchtime when he took out a rather large syringe and injected himself with it.
I asked him ‘what are you doing?’
“I’m a diabetic” he replied.
For me, this was a real ‘WTF’ moment. Not only had I never met a diabetic, but I didn’t even know what diabetes was. In my defence, I was only 8 and let’s be honest, what child has an understanding of any disease at that age unless it has a direct impact on them?
Fast forward 28 years, as I approach my own 25 year anniversary as a type 1 diabetic, I must now ask the question - with an estimated 400,000 Type 1 diabetics in the UK alone, has the level of awareness and education for the disease amongst ‘non diabetics’ within society moved on? And does it matter?
Well, put simply, it does matter. It matters because when there is a lack of awareness for such a serious, potentially fatal illness, what actually happens is that a sense of burden is taken on by the sufferer themselves.
You see, in my own experience, the lack of awareness for diabetes (and in particularly type 1) within society has often made explaining the condition to others extremely difficult and so where possible, I simply avoid disclosing my condition to others around me. I realise these actions are dangerous, yet even today, I do not possess the courage to widely disclose this condition I have had for a quarter of a century.
As most sufferers will tell you, managing this disease is difficult. However, managing the misplaced assumptions and the lack of education amongst the wider public is similarly as laborious and challenging. The question is, who else reading this shares my story? How many of you have a best friend or colleague who has no idea how you feel when you have a high blood sugar, or when you’re (even worse) hypoglycaemic? Do they understand that sometimes its impossible to perform at your best in the office or on the sporting field, not because you’re incapable, but because you suffer from an entirely misunderstood and misrepresented condition?
It is for these reasons that we need Living Loud. We need it to raise awareness for sufferers, so that the next time you have a hypo in a meeting you don’t need to be apologetic or embarrassed for going quiet, off coloured or for having trouble processing information. We need it so that the next time you go to a bar or restaurant you don’t have to explain to staff why ‘normal’ coke isn’t ok. And we need it so that the wider society understands why its ok to carry needles around in your pocket and not be looked upon as a drug addict (ok, hopefully that’s an exaggeration, but its probably happened to someone somewhere!!)
Ultimately, being a type 1 diabetic is neither easy, fun or simple. And like all auto immune diseases, it is neither the sufferers fault, nor was there anything the person could have done to prevent its onset. With Living Loud, we want to make type 1 diabetes not only mainstream, but a condition deeply embedded within the subconscious of the wider public, so that education and an understanding of the condition may be fostered at all times.
Chances are that everyone reading this blog knows a type 1 diabetic, but how many of you has a friend or colleague keeping their condition from you? It is time to encourage type 1 diabetics to become vocal so that we can take our condition mainstream and ensure that no one lives in silence or with any form of burden.