When I was diagnosed with type 1 diabetes as a child, the one message that doctors and nurses made sure I got, was that as a diabetic, I could lead a completely normal life, like any other non-diabetic. Diabetes wasn’t something to fear, which is true, and diabetes would not affect my life at all, as long as I took care of myself. But after over 25 years of having the condition I can say that being told this, both upsets and unsettles me, because being diabetic isn’t normal, and we can’t just lead a perfectly normal life. Things are always going to be different, and accepting that makes it easier to cope than just trying to be ‘normal’.
Now, this doesn’t mean that we are abnormal people, or that being diabetic will be difficult and things will get worse. For some people their diabetes doesn’t affect them much, and they can and do get on with their lives as they did before. But having diabetes, especially a form of diabetes that’s medicated, does change your life, and for some people like me, trying to be normal makes being diabetic all the more difficult.
A life changing diagnosis
Diabetes is life changing. You have to change how you live every day. You can’t just continue to eat as you once did, ignoring what you’re putting into your mouth, or just being wary of eating healthy foods versus ones that are not. When you are diabetic you have to look at everything you eat, calculate or estimate just how much carbohydrate you are going to consume and then inject the right amount of insulin to correspond with those carbs. Sometimes you even have to do mathematics, work out a quick equation, just to know how much to inject. And all this has to be done every single time, every single time you have to eat.
Diabetes doesn’t let you take a day off. Every day is the same. Check food first, calculate dose and inject, you can never be spontaneous and just eat. Sure you can go to a party, and get lost in how much you ate, but if you forget to work it out or even forget to inject at all, then it’s going to haunt you later as headaches, thirst and needing to pee, as your blood sugar shoots through the roof.
Sometimes diabetes will give you a break. Sometimes you’ll feel fine. You can have days, weeks or even months with no problems at all. But then all of a sudden your blood sugar swings too high or too low, and you have no idea what the cause is. Sometimes you can work it out: stress, insomnia, a period, but sometimes the reason is unclear. But having a blood sugar that’s abnormal, even if it’s just the once, can cause havoc on your insides, as you feel hungry, thirsty or shaky.
Why you should be normal
I understand why doctors and nurse say what they do. That you can lead a completely normal life, just like any non-diabetic. Saying this is supposed to instil a feeling of empowerment. That you can do anything you want in your life, that you are not restricted from any career path, that you aren’t sick, that you are…normal. But these words can have a negative impact too, especially when you are struggling to get things right, and you are trying your hardest, but it’s not good enough.
When I became diabetic I believed in those words, I believed I could do anything and achieve anything, and of course there are no barriers to what you want to do in life as a diabetic (except if you want to drive heavy goods vehicles). But as the years went on and my blood sugars became worse, swinging from high to low nearly everyday, I began feeling bad, very bad and very depressed. I was always trying to inject something, I never stopped taking my insulin, but no matter how hard I tried to understand why something had happened, I just couldn’t get my diabetes to be stable. Every visit to the doctor was agony as they told me I could lead a normal life. But I couldn’t just lead a normal life, could I? I didn’t know how to fix it, and failing to be able to take care of my blood sugars, made me feel like a failure at being diabetic.
Throughout my teenage years, I never met any other diabetics or spoke to any online. The internet wasn’t as big as it is now, and I wasn’t able to meet any other kids or teens in my situation. I felt alone and isolated and because I couldn’t fix my diabetes, I kept feeling like a failure. I was the failure…it was me who was wrong…there was something wrong with me. I wasn’t normal and being told that I
could should be normal made me feel worse.
I am (almost) normal
A revelation came when I began reading other diabetics stories after meeting some online. It wasn’t until I was in my early twenties that I finally began to meet other diabetics, both online and in reality, and shared my story with them, that I started to feel good. Things I had felt were only my problems suddenly were happening to others too. I wasn’t the only person having horrible high blood sugars, I wasn’t the only person confused about low sugars in the night, I wasn’t the only one to feel confused and fed up anymore. I wasn’t a failure anymore. There wasn’t anything wrong with me. I wasn’t abnormal…I was normal. It was normal to not feel normal. It became normal to not be able to cope. It became normal to have days that went wrong, and it was normal to be lost and feel a failure.
There’s nothing stopping a diabetic from leading an almost normal life. We can do anything we want and be whoever we want (as long as no driving of heavy goods vehicles are involved!). There’s nothing stopping us from doing what we want, but to pretend that we are ‘normal’, like we are non-diabetics is stupid. We will never be completely normal, our pancreases aren’t functioning properly or at all, and that’s not normal. A normal working human body has a pancreas that works, so we’ll never be completely normal. We will always have to count carbohydrates, we will always face the possibilities of fluctuating blood sugars and we will always have to face the effects that high and low blood sugars has on our physical and mental health. Once we realise that this is who we are, and that we will sometimes struggle to make sense of this disease, and once we also realise that we are not alone in this world and on our path, that there are others like us out there…Then we can lead a ‘normal’ life.
It may not be a completely normal life, but I’m proud to be able to say that I am (almost) normal 😉
Do you struggle with your diabetes or have it well controlled? do you know someone who is diabetic? Would you feel better or worse trying to be ‘normal? Let me know what you think in the comments below 🙂