Diabetes is a condition often mentioned in the media, one with a lot of stigma around it. What the media fails to specify time and time again, is that there are many forms of diabetes. The two that attract the most attention are normally Type 1 and Type 2, but there are actually up to twelve types in total.
As someone who has been diagnosed with Type 1 Diabetes since the age of nine, I have done on average, 17,531 injections over the course of the twelve years I’ve dealt with this condition. This isn’t including the daily finger pricks (normally at least four a day), the blood tests, and any other needles or vaccinations I’ve had due to my diabetes.
It’s quite honestly the hardest thing I have ever had to deal with, and it’s every day of my life, 24/7. There is no let up, it’s something on your mind at all times, and it has to be that way to ensure that I keep myself healthy to the best of my ability. In many ways it is easier to deal with as time goes on, but I have moments when it knocks the wind out of me to consider how much I have to do. One wrong move and I could literally kill myself within hours. It’s terrifying.
However one of the things that upsets me as I first mentioned, is the stigma that surrounds the condition of Type 1 Diabetes.
I do at least four injections daily, depending on what my blood glucose level is that day. I test my blood glucose on average four times as well, but again this can differ depending how I’m doing. It’s hard to manage when I can do the same thing every day, eat the same food, drink the same drink, but still have vastly different glucose readings one day to the next. As hard as it is to manage, it’s even harder to explain. After all, how do you explain a disease that leaves no visible trace?
Especially a disease in which there are so many forms, so many sufferers whose life style varies wildly. In the 12 years I have managed this disease I’ve had to deal with what feels like a constant barrage of questions and judgement.
“Oh, diabetic? But you aren’t fat?” “There’s no way you’re diabetic, you’re so young!” “I bet you regret eating so many sweets now, don’t you!” and one of my favourites is, “But, you don’t look diabetic”.
So let me clear some things up. No, I’m not fat. This can be a common misconception, as one cause of Type 2 diabetes can be obesity. Can be, but not always! Yes, I was quite young, but Type 1 diabetes, mainly affects younger children. Again this is not always the way, as I’m sure you can tell by now, diabetes can be a fairly unpredictable disease. Next, no I don’t regret eating so many sweets. Because I didn’t eat that many. My parents, nor myself, contributed in any physical way to me developing diabetes. It is an auto immune disease that can strike the healthiest of people, child or adult. My immune system mistook my healthy, insulin producing cells for something more sinister and destroyed them. And no, maybe I don’t look diabetic. I don’t even know what a diabetic is supposed to look like. Quite honestly, you probably pass at least one diabetic in public on a daily basis. There are no discerning features that scream “diabetic” when you look at any of us.
It can feel like a constant battle. Trying to keep my blood glucose in a perfect range is sometimes damn near impossible, which is so mentally and physically draining and quite honestly, there are days when I am totally ready to give up. Any emotion can have an impact. If I’m excited I drop too low, if I’m stressed, my glucose rockets. Both high bloods and low bloods are equally dangerous.
Low bloods are the most debilitating, for me personally. I become confused, panicked, I shake so hard sometimes I can’t physically get a drink in my mouth to try and bring my sugars back up. It’s hard to handle at any time but sometimes I can be asleep and wake up to feel I am already in a bad hypo, which is so scary. Most people are disoriented enough when they first wake up, but to wake up with those symptoms and know you might only have minutes before you reach a point that you’ll lose the ability to look after yourself, is awful. When I was 15, I didn’t wake myself up. My parents found me in bed, clearly in a bad way, and whilst they were trying to bring me round, I began to fit. I have no recollection of any of this, and to this day it terrifies me to think what could have happened if they hadn’t found me when they did.
High blood sugar causes me to become dry mouthed, my head feels ready to explode, my muscles ache to a point where I can’t move. I’m lucky in that I can normally get myself back to normal pretty quick, but if I’m suffering a virus or a sickness, my body can become extremely insulin resistant and it can be days before I am better.
The complications from high blood sugar are sickening. Blindness, amputation, nerve damage, the list goes on. As someone who did not accept my illness until years after I was diagnosed, at 21, I am already feeling the effects of not looking after myself. When I was 16, I became very sick and my body went into DKA (Diabetic Ketoacidosis). Your body stops breaking down sugar and instead breaks down fat as a source of fuel. It leads to a build-up of a chemical called “ketones” and your blood literally starts becoming acidic. I let my self-care slip, and within a couple of days, my organs began to shut down and I spent days in a high dependency unit on a constant drip of IV fluids and insulin, basically trying to survive. I wasn’t conscious enough to understand how ill I was at the time but looking back it was the scariest experience of my life.
Due to this, I suffer from diabetic retinopathy and I’m blind as a bat. I suffer from neuropathy in my feet, which is basically nerve damage, and it can be crippling. I’m now on very strong painkillers, and it’s quite honestly the only thing that allows me to sleep at night. Without them, my feet feel as if they are on fire, combined with a fuzzy, stabbing, sickening pain that has brought me to tears more time then I care to admit.
As scary and as daunting as all this is, I still consider myself very lucky.
Type 1 Diabetes has made me the person I am today. I am well aware that there are many conditions that cannot be handled, cannot be treated and as much as I hate needles, it keeps me alive. However, illnesses like this are relative. Just because someone else has it worse than you, does not mean that what you are going through is any less difficult, the same as just because someone has it better than you, should mean you’re miserable.
Some diabetics find this easy to handle and cope wonderfully, others struggle with denial and generally do not face up to it at all. Personally, one day I’m fine and I can handle whatever is thrown at me. The next, I can hate everything about what I have to deal with. There are nights when I’m too scared to go to sleep, in case I hypo and don’t wake up. There are days when my skin feels so sore, the finger pricks and injections I get on with most days, bring me to tears. Knowing that as long as a cure isn’t found, I face this for the rest of my life is daunting. And there are days I sit and worry that if I am ever fortunate enough to have children, they may face the same battle I do every day. I cannot imagine what my parents have had to deal with. They have held me while I sat and sobbed that I couldn’t do it anymore and they have sat up all night, keeping me safe and letting me sleep and every day I am so grateful for what they have been through with me.
So if my ramblings, give some idea of what life as a diabetic is like, then good. If people can read this, and see that in fact, Type 1 Diabetes is not self inflicted then great. The media have a responsibility to help raise awareness, to specify the difference between the different types of diabetes and to help find a cure. But diabetics too, need to stand up and address the issue. Too many of us are ashamed of our illness, worried about being judged, the list goes on. We need to speak up, stand up and put people straight. We are very lucky that we can deal with this illness, but I constantly live in hope that one day, we won’t have to.