If you were to look at me, you would think nothing different about me. I am a relatively fit, active and smiley 32-year-old, Yes, my friends slag me off for being so pale but that is more my avoidance of too much sun and my Irish skin, not sure why I decided to live in the desert! This month will mark my 20th year anniversary of living with a long term invisible illness, also referred to as a disease. I suffer from Type 1 Diabetes; one of my biggest frustrations of being a person with diabetes is that people group diabetes as one. My family even being one of them. I remember being questioned by my sister as to why had I lost so much weight. I was 12 and in my own little world, I had no idea that I had lost any weight. My brother had been diagnosed with diabetes a couple of years previously. I remember hearing, “He drinks too many sugary drinks and this is what may have caused it”. This wasn’t the case, he just happened to develop Type 1 late in life as it is generally seen in younger children. When it was discovered that my blood was reading high, I remember thinking and feeling that I must have done something to cause this and what had I done, I felt my life was over.
First, let me explain what diabetes is. It is estimated that 422 million people worldwide have it and it is one of the leading causes of death in the world. It is the breakdown of the function of the pancreas; the pancreas is an organ in the body that breaks down carbohydrates into sugar to give us energy. In someone who has not yet been diagnosed with diabetes because your pancreas is not working or has slowed down, it starts burning your fat for energy. Sounds like the perfect token to weight loss, which it isn’t. It has become, in the last few years, a rise in people with diabetes, thinking this very thing and avoiding taking their medication. So much so that diabulimia (diabetic bulimia) is now a recognised eating disorder. The reasons why it is so dangerous is it can cause your liver and kidney to start failing and the chance of losing sight and a limb. Not so appealing now. Diabetes is about controlling your carbohydrate intake to match with your medication. Depending on how you manage your medication and the type of diabetes you have, it may look different.
So now you know a little more about diabetes. There are three main groups of diabetes.
So the 3 main types, you have
- Type 1 – which is when your body literally attacks itself for some reason causing your pancreas to shut down. It generally happens when you are a child or adolescent, although, in recent years, children have been developing it now later in life.
- Type 2 – can be caused by a mixture of things if there is a family history, (although me and brother both have type 1, there is no link of it being down to genetics), poor diet, being overweight and smoking, to mention a few.
- Gestational diabetes – developing diabetes while you are pregnant, you may have similarities to a person with type 2, example your diet, and health and family history. You may not have diabetes after you have your baby but you are at a higher risk of type 2.
The symptoms of both can be similar or different, and so can the treatments. When campaigns talk about fighting diabetes, it is type 2 that they speak of. I remember when people would talk to me about diabetes and the look they would give me when I would say I am a diabetic and on 5 injections a day, and say, “Oh, you must be really bad so”. I can assure you, I am not, but as a young teenager, battling every day trying to maintain a normal blood sugar level and be a normal teenager these comments used to really hurt. These things don’t bother me anymore as much anyway. I feel I am lucky because I have enough access to medical supplies; there are people in the States that cannot afford their medication because it is too expensive.
Even though I would class myself as relatively well-controlled, things can still go wrong. I have been hospitalised twice with having the stomach flu, it was in the second year of me developing diabetes, and I was not able to maintain my bloods so spent a week each time in hospital. I have had episodes that I don’t remember when my bloods have dropped so low I am close to unconsciousness. One particular time, my sister checked my sugars and made me drink something sweet, while I argued and hit her away. I am not an aggressive person and I have no memory of it at all. I just remember feeling sleepy while watching television. People with diabetes can get very argumentative when their sugars are too high or too low. The symptoms of a low blood are very like someone who has drunk too much alcohol, drowsy, slurred speech, uncoordinated, and not making any sense. And it is a really weird feeling; it is like your brain and body don’t work together. I have stood at my fridge door for 10 minutes once, knowing that I am there to get some orange juice but not actually picking it up.
I used to make light of it when I was younger, to make it easier for myself to deal with it and to feel more “normal” around my friends. I can still hear one of my friends making a joke one night offering me some coca-cola and laughing saying oh no you might die. Although this person was naive to the facts of my condition, it was very true and hurtful. With celebrities opening up about their diabetes, like Nick Jonas, and setting up beyond Type 1 it has made people more aware and realises there are others struggling with it too.
Diabetes is not the only invisible illness there is lots of them, such as;
- Mental Health Illnesses such as depression or anxiety
- Certain Brain Injury Disorders
- Epilepsy
- HIV/AIDS
- Cystic Fibrosis
- Attention Deficit-Disorder or Attention-Deficit/Hyperactivity Disorder(ADD/ADHD)
- Some Learning Disabilities
- Crohn’s disease or Irritable Bowel Syndrome
- Celiac disease
- And many many more
I know there is many more and each one has their own different complications that I would never understand. But I am sure like me, for every other person that has an invisible illness, it is something that is consistently on their mind. Having to do quick math when you are at a restaurant to try to figure out how much medicine to take, always having to have food on you, if you are not feeling well what other complications will this have for you, not knowing what foods you can and can’t eat, how the sun may affect how your insulin is absorbed. What complications will there be later in life? And the worst, never having a day off. Now, I count myself lucky as from having diabetes, it has made me so aware of how your physical and mental well-being is linked, which is great for the work I do. I can easily see how hormones affect your sugar levels and your behaviour, how tiredness and not feeling well affects the body too and how you feel. It has made me become proud of myself in ways I never even knew. I bumped into my high school basketball coach a couple of years after I finished school and she told me how proud she was of me back then. I was amazed because I was definitely not the first choice for games. When I asked her why she told me that I never let my diabetes get in my way and that gave me so much more courage to not let it define who I was and what I would do. So for all that, I feel grateful. Yes, I will have this all my life, but I have managed to live in 4 different countries and travel to many random corners of the world on my own. As I have said, you can’t see my illness and know the impact and the struggles I have in my life, but you can see how I don’t let it control me. Most people around me don’t even know I am a diabetic, not because I hide it but because I don’t need it to be me, it is just a part of me.
One thing I hope you take from my story is that a lot of people are fighting an invisible illness, no matter what it is or who it is. We need to try to understand the struggles they are facing every day and how exhausting it is to have this extra baggage all the time. Even now in the midst of Covid-19, I am keeping track of all the food and medication that I have to ensure I have enough of and avoiding going out for weeks on end because it is too much of a risk for me to be in contact with someone that potentially has it. An interesting post I saw the other day had words to the effect of, ‘we are all in the same storm just in a different boat’, and I think this can be used in any situation, especially for those who are fighting a never-ending invisible battle. To everyone I know and don’t know who is fighting this battle, you are doing great, you are not alone and keep fighting.
